How to Get Pills into a Patient Who Can’t Swallow Them by Deborah Salae Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com This is the article I wish I’d read years ago when my then three-year-old daughter had her first seizure. Kira is now twenty-one, and for the past eighteen years, my challenge has been to get anti-seizure medicine into her twice each day. I say challenge because she simply cannot swallow pills, no matter how hard she tries, perhaps due to a hypersensitive gag reflex. It hasn’t helped that she also has a will of iron. What Didn’t Work Of course, we tried and tried and tried the often recommended technique of having her practice by swallowing a Tic-Tac or a miniature M&M, with the result being that she was soon water-logged, but no pill made it down her throat. I tried crushing the pills between two spoons and mixing the resulting powder in juice. The taste was terrible—imagine the combination of aspirin and apple juice. All the casual suggestions I was given by people who didn’t have to face the challenge of getting medication into a stubborn child every single day just added to my frustration. “Mix it in applesauce,” they’d say, “or mashed potatoes, or oatmeal, or in cereal.” You might get away with this once or twice, but how do you get such an odd-tasting concoction into a kid the fourth time, the hundredth time or the four-hundredth time? We tried using a straw. By placing a pill at the back of the tongue, and having her sip liquid through a straw, a more open passageway would supposedly be created, and the pill would slide down her throat. But again, no pill slid down her throat. I then read that instead of tilting your head backwards to get a pill down, which is instinctive but actually constricts the throat, the better method is to look down at the floor while swallowing the pill. Again, Kira swallowed a lot of liquid staring at the floor, but swallowed no pill. I bought something on the Internet (www.oralflow. com) that looks like a baby’s sippy cup. They are widely used in convalescent hospitals to help elderly patients take their meds. It’s called an Oral Flow Cup, and it actually worked; for getting one pill down with a whole cup of water. But since Kira was taking three to five pills at a time, this was not our solution. What Did Work The ice cream years My first successful idea came when Kira was a little girl and on just one medication (Lamictal). I would crush the pills, then mix and freeze them in a small amount of ice cream. The number of Lamictal pills increased as she grew, and crushing them between two spoons became too messy and time consuming. I then bought a plastic pill crusher (most chain drug stores carry them; I found that the blue ones work better than any other kind). It has a cylindrical chamber where you put the pills and then a thick screw-on top that you rotate back and forth to pulverize them. My method was to put about a teaspoon of ice cream in a metal one-quarter-cup measuring cup, stir in the crushed pills, and then freeze the mixture. (The metal speeds up the freezing.) It turns out that the 3 August 2009 Epilepsy: Insights & Strategies How to Get Pills into a Patient Who Can’t Swallow Them Salae cold has the effect of blocking some of the bitter taste. This method worked pretty well for several years, and I could vary the flavor of ice cream when Kira would start to get tired of one or the other. One day when I was explaining to a pharmacist how for years I had been crushing Lamictal pills, he gave me a most welcome tip: the 25 mg Lamictal tablets we were using actually dissolve easily and quickly in water. This was so much easier. I’d put the pills in the metal measuring cup, add a few drops of water and watch the pills swell up like tiny marshmallows as they dissolved, then add the ice cream and freeze. As an unexpected bonus, watching the pills transform was like a magic trick that amused Kira and took away some of the drudgery of having to take medicine. If we were away from home when it was time for Kira to take her meds, I’d pack an Igloo with ice, wrap my metal measuring cup with the frozen mixture in aluminum foil and bury it in the ice. The chocolate and Nutella years Lamictal kept Kira seizure free from age five to twelve, but when she entered puberty, full-on tonic-clonic seizures returned with a vengeance, along with a new and miserable problem. She developed migraines that would leave her nauseated and dizzy for hours at a time. This meant that her drug regimen became even more complicated. Now, along with the Lamictal, Kira had to take Keppra and Propranolol in hopes that this concoction would stave off both the migraines and the seizures. The doses of each of these drugs grew ever larger, since both the seizure activity and migraines were increasing. I felt like Lucretia Borgia as I ground up a fistful of pills each day. Ice cream was now too delicate to mask all these chemical tastes, no matter how frozen the mixture, and so I turned to chocolate pudding (from pudding cups) which I would freeze in the metal one-quartercup measuring cup. As the dosages increased over the years and the pudding failed to cover the taste, I moved on to mixing the concoction with Nutella (a thick paste of chocolate and hazelnut butter with a texture like cake frosting, sold next to peanut butter in most large grocery stores). The benefit of using Nutella is that you don’t have to freeze it because it’s so thick and richly flavored that it does a good job of masking bitterness. 4 Epilepsy: Insights & Strategies August 2009 To make the medicine more portable, now that I didn’t have to freeze it, I was happy to discover handy containers called soufflé cups that are sold at Smart & Final and restaurant supply stores. They’re little clear plastic cups (like the kind that red pepper flakes come in when you get take-out pizza) and come in packages of one hundred for about three dollars. It was liberating to now be able to pack Kira’s medicine in a lunch box or backpack if she was going to be away from home. I stoop to bribery Fast forward several years to an oft-repeated scene: it’s nearly midnight on a school night, and for the past several hours I have bargained, threatened, cajoled, and begged with Kira to “Please, please, please take your medicine.” Now a teenager, she thinks she knows everything and has decided she doesn’t need to take medicine. Due to cognitive deficits, Kira’s understanding has always been that of a younger child, and so all my warnings and logical explanations of the consequences of not taking her medications fall on deaf ears. What to do? At this point in her life, shopping was the big attraction, and money was the big carrot. I bought a batch of plastic poker chips and got a large clear plastic jar (like the kind peanuts come in) and cut a slot in the lid. This was the deal: every time Kira took her medicine on time and without any fuss, I’d give her a poker chip that she then put in the jar. Saturday became pay-off day. If she took her meds twice a day, every day, without a battle, that meant that on Saturday she’d have accumulated fourteen poker chips, which she could redeem for one dollar per chip. Fourteen dollars a week was good mall money. But, you needn’t use money as the reward. It could be ten poker chips earns going to a movie, having a friend over, or whatever would be motivating. Salae How to Get Pills into a Patient Who Can’t Swallow Them When I mentioned my poker chip deal to a nurse, thinking she could share it with other harried parents, her reaction was that it was a terrible idea, because no one should have to be bribed to do something that is vital to his or her health. I mentally rolled my eyes and thought, “You try struggling with Kira day and night to get her to take her pills before school and before bed and see how reasonable and civilized you both act.” I also assuaged my guilt by recalling that a child psychologist once told me that bribery is actually a part of life—that getting a paycheck is the bribe we get for going to work. For me it was a clear case of the ends justifying the means. The best mixture yet A couple of months ago, Kira told me that after several years of doing so, she simply could not stomach Nutella anymore, that she was sick of the thick texture—it was like having to swallow a spoonful of peanut butter. I dug the aforementioned Oral Flow Cup out of the cupboard and Kira gamely tried to swallow a Depakote capsule (one of her newer meds), but it got stuck in her throat. It was back to the drawing board, and since ice cream had worked so well for so long, I went to the store hoping to find some kind of novelty ice cream—like those little chocolate covered Nibs they sell at movie theaters— to mix with her pills. Next to the freezer section, I spotted a shelf full of something called “Magic Shell.” It’s syrup that you pour onto ice cream that instantly turns into a frozen crispy shell when it hits the ice cream. Hmmmm… that had potential and, in fact, it is what we use today, minus the ice cream. I squirt about a teaspoonful of the Magic Shell syrup into one of those little plastic soufflé cups, stir in the crushed pills with a tooth pick, and pop the cup in the freezer. In about thirty seconds, I now have a solid chocolate disk that easily pops out of the cup with a nudge from a spoon, like a piece of candy that’s easy to chew and swallow. Magic Shell comes in different flavors: chocolate, Reese’s peanut butter cup (a current favorite), and caramel. The right tool for the job Throughout the chocolate years and into the Magic Shell era, I had to grind Kira’s pills in a plastic pill grinder. It truly became a daily grind, and I had a callous on the base of my right thumb to prove it. About two months ago, while I was standing in line at a hardware store that sells kitchen items, I spotted and bought a small, one-cup-size ceramic mortar and pestle. I love this thing. Now grinding the pills is so much quicker and easier. They say necessity is the mother of invention, and that certainly has been the case in my search for ways to get pills into my beloved Kira. I hope one or another of the tricks I found throughout my journey in dealing with her epilepsy will prove useful to anyone who’s struggling with someone who just can’t get a pill down the chute. Deborah Salae works as a legal assistant to a trial attorney in San Francisco, where she lives with her husband, daughter, and two great dogs in a 105 year-old house. Since she spends most of her workday in front of a computer, the Internet has become a valued tool in understanding and coming to grips with her daughter’s epilepsy. Over the years, her mantra in dealing with seizures and side effects has become, “Surely we can do better than this,” and they have. See the editor’s remarks on pediatric drug formulation on the next page. August 2009 Epilepsy: Insights & Strategies 5 How to Get Pills into a Patient Who Can’t Swallow Them Salae From Robert S. Fisher, M.D., Ph.D., the Editor-in-Chief of Epilepsy.com Children comprise a significant fraction of the medicated population, including those with seizures. Having a good variety of pediatric antiepileptic drug (AED) formulations would seem to make sense. Unfortunately, drug companies cannot simply decide to produce a pediatric formulation. First, there must be an approved pediatric indication (meaning official approval to use the drug for a particular condition and age), backed up by clinical trials in that age group. The table on the next page shows approved ages for pediatric uses of AEDs, according to the United States Food and Drug Administration (FDA). Other countries and regulatory agencies may list different ages. Old drugs, such as Dilantin and phenobarbital, are “grandfathered in” for pediatric use on the basis of decades of experience. All new drugs must be tested in a pediatric population of a specific age range, in order to receive approval for pediatric use. These clinical trials cost many millions of dollars, and drug companies make business decisions about whether the potential market justifies the high cost of pediatric clinical trials. AEDs often are used at younger ages than those specified, when doctors consider the likely benefits to outweigh the risks. However, some AEDs, for example divalproex (Depakote), have higher risks in young children. If a pediatric indication exists, then there can be a pediatric formulation. Drug companies must show the pediatric formulation to be well-tolerated and properly absorbed into the blood system. If the drug has already been shown to be effective in children, then efficacy need not be demonstrated again in a new formulation trial. Pediatric formulations include liquids (suspensions, elixirs, syrups), a rectal gel (Diastat), chewable tablets, dissolving wafers or sprinkle forms. Sprinkles are capsules containing tiny round particles that can be “sprinkled” over a food when the capsule is opened. Intravenous forms of AEDs, where they exist (see table) can be administered to children in an emergency by medical personnel. Skin creams would be useful for administration of AEDs to children, but no AED creams exist. Nasal spray delivery forms of AEDs are under development. Some pharmacies will prepare liquid forms by pounding pills to a powder and dissolving them in a solution, but reliability of absorption and dosing varies with this method. Table 1: Approved ages for pediatric uses of AEDs Keep more issues of Epilepsy: Insights & Strategies coming. Show your support for this great resource. Donate to the Epilepsy Therapy Project now. Just go to www.epilepsy.com/etp/donation_form. Make your donation today. 6 Epilepsy: Insights & Strategies August 2009 Salae How to Get Pills into a Patient Who Can’t Swallow Them Generic carbamazepine clonazepam clorazepate diazepam gabapentin lacosamide lamotrigine levetiracetam lorazepam phenobarbital phenytoin pregabalin rufinamide topiramate valproic acid zonisamide Brand Name Tegretol Klonopin Tranxene Valium Neurontin Vimpat Lamictal Keppra Ativan None Dilantin Lyrica Banzel Topamax Depakote Zonegran Pediatric Approval* Age 6 and older Used, age not specified Age 9 and older Age 6 months and older Age 3 years and older None: age 16 and older Age 2 and older Age 4 and older Used, age not specified Any age Any age None: age 16 and older Age 4 and older Age 2 and older Age 10 and older None: age 16 and older Pediatric Formulation Suspension: 100 mg/5 mL** Chewable 100 mg tablet Dissolving wafers 0.125, 0.25, 0.5, 1, 2 mg None Diastat rectal gel i.v. form Solution: 250 mg/5 mL** None for oral i.v. form Chewable: (Lamictal CD) 2, 5, 25 mg 100 mg/mL** oral solution i.v. form Ativan Intensol oral concentrate i.v. form Elixir: 20 mg/5 mL** i.v. form Suspension: 125 mg/5 mL** i.v. form None None Capsule, Sprinkle: 15, 25 mg Sprinkle capsule 125 mg Depacon i.v. form None * by US FDA ** 5 ml is one teaspoon Get the most current news about epilepsy, treatments, new medications and more delivered to your emailbox. 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