How do you know when your child is responsible enough to handle their own medications? How do we know they will actually take them, and not just tell us they did while really skipping doses?
I’ve seen posts on transplant Facebook pages where this exact thing has happened. One mom said that after her teenage son received his transplant, she kept track of his medications for a few years. Then she let him become responsible for them. She later realized that he had been missing doses. He became very ill and was soon thereafter diagnosed with rejection.
When you do something you’re not supposed to, it becomes easier and easier each subsequent time to take that same action. So skipping one dose and not having immediate repercussions makes it easier to miss more and more doses. Before you know it, you’ve caused irreversible damage.
So the question is, how do we make sure our kids take their medications? How do we know when to loosen the reins? When do we let them take over? There is no easy answer for this one. It’ll depend on each child and how well they demonstrate their readiness. But even then, at least for a short while, they should be part of the checks and balances system (at least, in my humble opinion). They don’t want to feel babysat, but they need to be. Luckily, there are several ways to set your child up for success.
First and foremost, they need to understand the full gravity of why they take their medications and what can happen if they don’t. To that end, I recommend you take them back to the transplant ward or Pediatric Intensive Care Unit where they were treated, and let them see all of the sick children still waiting for their life-saving organ. Let them see those who would gladly trade them their current position for the inconvenience or “uncoolness” of taking medications. Show them how awful it would be to have to go back there because of a rejection. They wouldn’t be able to see their friends, go to school, or just live their normal lives. Better yet, let them talk with some of those patients. Perhaps they don’t remember, either from being too young or from being too far removed from it, just how terrible being a patient in that ward can be. Remind them what it’s like to be tethered to an IV pole.
Another way to keep tabs on them without them feeling belittled is to let them keep tabs on you. If you take medications, or even multi-vitamins, let them “remind” you to take your pills. Keep a daily pill box for each of you, and make it something you do together. That way, you can watch them to make sure they take their medication, and they can feel like they’re accountable for you as well. It becomes something you do as peers, not something they do because a lame, bossy, dictatorial parent told them to. It’s hard for kids to listen to their parents about anything, let alone something “they went through but you didn’t so you have no idea.”
If it’s financially feasible for your family, you may also consider getting them a smart watch that they can sync with their phones. That way, when their phone alarm goes off, it vibrates on their wrist as well. If you’re not with them, hold them accountable by having them text you. Granted, you have to trust that they actually took it when they texted you, but that’ll be something you have to work out with your child. Only you can determine if your child is ready to be trusted with that responsibility. I’m a pathological worrier who obsesses over my son’s medications, and I still lose track of time some days. But as soon as my alarm goes off, I hop to it and draw up those meds. You will have to judge when to trust your child with this responsibility.
If your transplant child is very young when they receive their transplant, you have time as your friend. You can drill into their heads that medication is necessary and they must take it. Repetitio Mater Studiorum Est! It’s in my Super N book, it’s in his “My Miracle Gift” book, and it’s something we’ll remind him of often as he grows up. If they know it from the beginning, it’ll be more difficult for them to buck that notion. Habits are hard to break, so make medicine a habit as quickly as possible. However, it still can’t hurt to drive home the point every once in a while like we talked about above, just to make sure they don’t forget just how necessary their medicine is to their very survival. This is one of the other reasons why we will keep visiting his ward and medical team in the future.
I think I always knew I had to take it, so it wasn’t really a problem. Sometimes I still don’t like taking it though.
– Laura Hofheins, 27 years post heart transplant