Parent hack: Getting young kids to take medicine

Quinn does not take medication very well. She’s rare. None of the parents in my epilepsy support group have this problem. NONE! Our neurologist also has the same experience with her patients. Her kids typically take their meds just fine. So we are pretty much left on our own to figure this part out. And we are still figuring it out but perhaps some of our lessons may be of helpful to you.

Background

Quinn was a happy and chill baby pre-epilepsy. She didn’t complain about much and was always happy just sitting there playing with her toys. She would smile when we played with her or be content just playing by herself.

After her diagnosis, we had no choice but to start with medication. And that was when the negative behaviors started. Incorporating medication into our lives was the hardest adjustment for our family. We used to be the family that didn’t believe in turning to medication for every little cold. We had to quickly accept that the side effects of medication completely pales in comparison to the side effects of her brain seizing. Plus the sooner we got her seizures under control, the higher the chances she would outgrow them.

Statistically if we control her seizures now, she has a 70% chance of outgrowing them by adulthood. Adulthood means by the age of 18 which is a long time away. Every time she has a seizure, it interrupts her brain development. So the earlier we control it, the better she will be in the long term. The pressure is on.

For more information about the background of her diagnosis, please see a previous post: When everything changed.

Unexpected Hurdles with Epilepsy Medication

Our Birth-to-3 therapist who first recognized Quinn’s seizures had warned us that with epilepsy, it was really about finding the right Rx cocktail that was going to control the seizures. So we were prepared for a lot of trial and error but nothing could have prepared us for the emotional rollercoaster. Seizure medication had to be slowly introduced in small bits in order to manage the side effects. Sometimes it took over a month before we got to an effective dosage. Then it became a game of how bad were the side effects and should we stop or keep going. And if we kept going and seizure relief was still not there, it was a slow process to wean the medication out of her system. If we were lucky enough to find the right cocktail, it would almost likely have to change because Quinn’s 3yo body was rapidly developing and growing.

With every dosage increase, we had to wait 10 days to observe her behavior. So we could have increased her meds at day 1 and if she started acting unusual on day 2 or day 3, it was a heavy mental challenge to stop your brain from associating it with the recent medicine increase. The neurologists had to repeat this to us several times. And we’ve had to repeat this to her teachers and therapists several times. No matter how many times we had to repeat ourselves, it didn’t remove the self doubt, fear, and questioning that goes on in my head. This was the mental feat I was not prepared for.

Get a neurologist you trust and who will call you back! If you do not trust your neurologist, this stress is multiplied 20x when you have a sick nonverbal child. Mistrust is built very easily when you can’t get a hold of the neurologist and only talking to the nurse. Because insurance companies only pay for office visits and not phone calls, a lot of neurologists are hard to get on the phone. They are overbooked with office visits and filling prescriptions or pre-authorization for prescriptions. We are lucky enough to start our epilepsy journey with a great neurologist. Her phone calls may be later in the day but she always calls without me having to follow up with the office again.

Another emotional hurdle that we learned a few months into epilepsy is dealing with pharmacy, insurance, and the whole process of filling prescriptions. I can do a deeper dive on this topic in its own post.

Behaviors

Epilepsy medications are meant to target different parts of your brain. This can affect your mood, your energy level, premature puberty, motor control, sensory processing, etc. Your brain is the central nervous system after all. Everything starts and ends with your brain. It’s so vital to life and my daughter’s brain is not working.

Since taking seizure medication, Quinn has been more moody and irritable. Because she cannot tell us how she feels or what she’s thinking, she resorts to tantrums and meltdowns to communicate that. This is similar to the terrible twos stage except the toddler is in a 3+ yo body. She has always been independent and willful and she took this up 10 notches when it came to meds.

Getting medicine into a willful non-compliant 2+ year old is the worst! With seizure medication, you need to get every last drop in. I remember asking the neurologist should we err on the side of too little or too much and I got reamed out for it. To me, the question made sense because sometimes Quinn would throw up the medication or swat it or spit a little bit out. So it was an idea of mine to maybe add a tiny bit more to make up for the behaviors.

We discovered years later that Quinn’s resistance is not due to the taste of meds. It is due to control. She does not want to take meds because we push it on her vs her wanting to do it herself. That’s fair. However, meds are non-negotiable. She has never gotten out of doing meds. Why is she still fighting us? We try mixing the meds into different types of food mediums, flavoring meds, rewards, token boards, toy dispensers, … It doesn’t matter. We could trick her maybe the first time but as soon as she’s onto us, the jig would be up. And once the meds are mixed, there’s no turning back unless she throws up the meds (which has happened).

My husband was the one to notice that she only fights on the first bite. We joke that after the first bite, she goes to her “happy place” and takes the rest of the meds with little to no resistance. If you think about it from the control perspective, it makes sense.

I’m not going to list examples of how she’s been resistant. I just want you to read the following content with that in mind. We try very hard to make med time a positive experience for her but it has been challenging. As a tiger mom, my instinct is to brute force it and eventually she will realize meds are non-negotiable. It doesn’t matter if she likes it or not. However, through experience, this is not the case. If we had kept up the brute force and disregard her feelings, she would get into a behaviour pattern that she is to always fight this and that should be everyone’s expectation.

Epilepsy Medications We’ve Tried

Below were the medications we’ve tried and the side effects we noticed in Quinn. All of them had the same dosing schedule (twice a day) so we rarely had to deal with her taking medication at school or daycare. When she had to take medication during the day, the school required a simple form from the doctor’s office.

Keppra – Mar 2016 – She was on this for a while because we really wanted it to work. It was the most “gentle” of all the seizure medication.
- Side effects: terrible moodiness and increased fatigue. This has been nicknamed “keppra rage.” EEG proved it did something, but not enough to warrant her being asleep most of the day.
Topamax – June 2016
- Side effects: loss of appetite. She lost a lot of weight and at one point stopped eating completely.
Banzel – September 2016
- Didn’t work
Depakote – January 2017 – current
- Side effects: fatigue and low blood count.
Onfi – May 2017
- Side effects: nothing. It also didn’t help seizures so we tapered this off pretty quickly
Zonagran – July 2017
- Side effects: very sleepy. No change in seizures
Lamictal – September 2017 – current
- Side effects: alertness and a lot of sleep issues.
- We got a honeymoon phase for a month where we saw no seizures but then they came back. We tried to combat the side effects by having her take this earlier during the day but it ended up not mattering.
Epidiolex – March 2019 – current
- Side effects: fatigue. Lowering her depakote helped fix this.

As for side effects, don’t google it. It would always stress me out. Ask your neurologist what you should be observing. Our doctor told us that the side effect list is usually pretty bloated because the pharmaceutical companies will list ANYTHING that comes out from a trial in order to protect themselves. Not all side effects are investigated and clinically proven to be linked to the medication. This is another reason to find a trusty neurologist!

Medication mediums – liquid/syrup/pills/sprinkles

Tips for administering liquid medications

Your pharmacist can flavor liquid medicine. This is an extra charge that some insurance companies won’t pay for. Walgreens actually has a list of flavors that work best with the particular med too. I tried to order one flavor once and the pharmacist kindly suggested the tested flavors.
Some medication can be made into gummy form. If it can be heated up, you can take your prescription to a compound pharmacy and get this done. Ask your pharmacist or doctor if there’s a compound pharmacy nearby and then call them to see what’s required. I’m unsure if you can do this with pills but it was an option we considered for the liquid depakote because it tasted terrible. We ended up nixing this option when we found a flavor that worked with Depakote. Plus Quinn was not a fan of gummy candy so we didn’t want to risk having to force feed her a gummy.
If you use a syringe, hold the syringe the correct way (see below). I noticed a lot of my past care givers would always hold the syringe this way. Syringes can get stuck sometimes so it’s very easy to accidentally apply more pressure than needed. This would result in the meds shooting straight to the back of Quinn’s through, causing her to cough the meds. If you hold it the correct way, you’ll have more control of the flow.

Mix Crushed Pills with Liquid Meds or other fluids

If you have to give pills AND liquid meds, try mixing the meds together. This way there’s only 1 dosage! Pills generally don’t have a strong taste so the it takes on the same flavor as the liquid meds.

If you just have pills, try mixing crushed pills with other thick liquids. We used Soylent. We discovered this meal replacement drink by accident, right around the time her appetite was non existent due to side effects. My husband was drinking this one day when she gestured to try some. Well, she loved it! It already had a slight chalky taste to it and masked the pills nicely. This was a life saver when she had no appetite. She gladly chugged this instead of eating.

Use a syringe to measure the liquid medicine (or pour your liquid)
Squirt the liquid meds into a medicine cup
Crush the pills and add it to the medicine cup
Use the tip of the used syringe in step 1 to mix the two, making sure to get the corners.
Now suck up the mixture into the syringe as best as you can. Include air if you have to.
Flip the syringe tip up and remove excess air.
Administer meds.
1. If you are going to premake this ahead of time, pull the syringe so you get a bigger air gap in the barrel. Store it with the excess air. When it’s time to administer the syringe, cover the tip with my finger, give it a shake to loosen the powder that settled at the bottom, then push the air out to administer.

When we were at this stage of her medication journey, we would give her the syringe while watching a movie and relaxing on the couch. We’d wait for her to be distracted by the movie, then slowly give it to her. Our TV was positioned high above a fireplace so her head would naturally tilt back. We had a specific hold for her too in case she fought back.

Mix Crushed Pills with Food

If syringes are not an option, try mixing pills with food. Here are food mediums that worked well mixing for us.

Apple sauce – this is the #1 choice I’ve seen between parents and healthcare professionals. Quinn did not like this combo for the first few years but has grown to like it now.
Ritz crackers + Nutella or other mixings – We would quarter the cracker, mix the meds in a sticky medium, and give it to her all in one bite. This was magical while it worked.
Peanut butter – this was the perfect medium for a long while. When mixed with meds, we could shape it like a ball and give it to her in one bite
Butter and sugar (frosting) – we would spread this on ritz crackers, toast, etc. We used this when we were traveling and forgot our food medium.
Jelly + crackers – this worked once in awhile. She was not a big fan of sweets.

Food that did NOT work well primarily due to it becoming liquid. Imagine chasing a resistant child with a spoonful of liquid cream. It’s a lot less stressful if the food medium can hold itself together and remain thick and stable. In case the meds get dropped or thrown (speaking from experience), the best medium will be easy to pick up and re-administer.

Whipped cream
Ice cream
Caramel – this wasn’t terrible but was a pain to clean if it fell
Cream cheese – the consistency was good but she didn’t like the taste

Only mix a tiny bite size bit of food with the meds. This rule only pertains to kids who fight meds. If they are going to fight and you are going to end up force feeding them, you are better off feeding just a tablespoon vs a small Dixie cup of meds. Even when we administered the meds on a ritz cracker. We only used 1/4 of the cracker.

Medication Tips and Tricks!

In case I didn’t repeat myself enough, find a doctor you trust!!! Look for referrals from other trusted doctors or local support groups. And if you don’t find one you like, shop around!
Develop a process to make sure you don’t miss meds or accidentally double-dose your child! Whether it’s assigning one person as the med giver, setting alarms, having a log, or prepping meds ahead of time, you need a foolproof way to make sure you don’t forget meds or accidentally double dose your child. See my post on prepping meds for more details.
Remove your distractions. Stress is high during meds. It’s usually helpful when my boys are not around. I’ve taught all my boys that when I am giving Quinn meds, I cannot help them with ANYTHING.
Find one place in the house that you always give meds. Make that place easy to clean. For awhile we would do it on the couch because we wanted her to relax but in the end, we only give meds in the kitchen while she’s on her high chair. You’ll be surprised how many times I’ve scraped meds off the floor, couch, carpet, her little hands just to make sure she gets all her meds in.
Experiment with distraction and motivators to make meds fun. Examples: iPad, treats, dancing, music, games, etc. I know one parent who would give a kiss between bites of meds.
Experiment with people who give meds. If she fights one parent, try having the other parent give meds. Try anther adult (grandparent/caregiver/etc). See if it makes a difference. We recently noticed that if we have guests over for dinner (someone she’s not used to), she’s less likely to fight.
If you are using food as a medium or motivator, remember to change up the food. Like all things, sometime she gets sick of eating the same thing every time. Keep it fresh.
Celebrate like crazy at the end, even if the meds didn’t go well.
If she throws up the meds after 20 mins, you don’t have to redose. If it’s under 20 minutes, we have to re-administer another full dose.. This rule may be different with your doctor so please double check with them.
Above all, BE PATIENT! Don’t lose it. People, I know this is SOO much easier said than done, especially after a long day, she swats your hand away on the 2nd spoonful and the meds lands in her hair. You don’t want to get into a pattern that med time should be an ugly and traumatic fight. Maybe you can force meds with a toddler but what happens when your child is a teenager? It’s worth establishing a good behaviour pattern now while your child is still young.

Where we are now…

By August of 2019, we started noticing no seizures. Her 24hr EEG in September confirmed our observation. Our neurologist was over-the-moon excited. “I know you said you haven’t seen any seizures but her brain looks like a typical 5 year old’s brain!! Is she speaking yet?!?” The doctor was so impressed that she said we could lower some of her meds if we wanted to. We didn’t. We didn’t want to rock the boat and given that she’s still growing, the dosage will likely have to change. Since then, we’ve seen a few seizures once a month or so. So it was the right call to just wait and see how this plays out.

Her current Rx cocktail:

Depakote
Lamictal
Epidiolex
Levocarnitine

I’m happy to report that since April 2020, we have not had to force meds or fight with her. Our current routine is as follows:

Dosage time: We usually give meds during mealtimes, right when she’s done eating. She’s already seated and can’t leave her high chair very easily. We should give meds a few minutes after eating since one of her meds messes with her digestion and vitamin absorption. We’ve since given up doing that and just do it after she’s done eating. It’s easier this way. Sometimes when she’s not particularly hungry, we’ll do meds. Sometimes that gets her eating more dinner.
I bring the meds to her (a container of applesauce and 1 syringe) at the table. She’s usually watching an iPad or just eating. I sit and mix her meds in front or next to her so she knows it’s coming.
I hold up one spoonful to her and wait. Sometimes, I say “take a bite” if she ignores me. I don’t offer any motivators or get anything ready ahead of time. I want to see if she even needs it (sometimes we are lucky). Most of the time she points to the special cabinet and say “chip”. That’s where we keep her edible motivators. Lately she’s been asking for shrimp chips. I learned from an ABA therapist that her motivators are spontaneous (in the moment). I wait for her to ask and then I use whatever she asks as the motivator. It’s not always an edible. Sometimes it’s just the iPad or a specific YouTube channel or a toy on a nearby counter.
Once she chooses her motivator, I hold up the spoon again and wait. This is where I get into defense and make sure she doesn’t swat the spoon. Sometimes I say “bite first, then X.” If she shuts down and refuses, I’ll play her favorite YouTube channel and not let her see it. When she looks up, I pause the video and say “bite first, then play”. The iPad is just out of her reach until she takes a bite. This usually gets her. The trick is to wait her out. By now, she understands that she’s stuck in a chair and we are not doing anything until she eats a bite.
After that first bite, she goes to her “happy place” and no longer resists. I immediately give her the motivator (usually 1 chip), play the iPad for good measure, and continue giving 1 bite of meds, then motivator, then meds, etc . Once she’s completely done, I celebrate by giving her a pile of chips and/or a cheer or high five.

Mike has his own variation but it’s not too far from mine. He might give her 1 chip first before demanding a bite or not give her the extra chips at the end. Honestly, it all depends on our collective moods. If we are exhausted and she’s in a terrible mood, we will get the chips and iPad all ready to speed up the process and avoid a meltdown. You have to read the situation and pick your battles. Sometimes, it’s a good thing that we don’t stick to a specific routine, especially if we want other caregivers to be able to give her meds too.

I have to remind myself many times that our silver lining here is that if she’s complex enough to require all these trials, it’s a GOOD thing! It means a light is on inside her little head. Human beings are supposed to have complex emotions and desires. It’s a good sign. It means she’s not a zombie. Now we just have to show her a way to communicate so she can grace the world with her unique ways.