This week, I’ve talked on social media about an incident with my oldest child. Cliff Notes version: At the age of 5, he put a putty knife through his eyeball. After a week long hospital stay, he was discharged home on three different types of eye drops around the clock as well as twice daily liquid steroid and an antibiotic medication that he had to drink.
At the same time, my youngest child— a toddler at the time— developed bronchiolitis and required nebulizer treatments every four hours around the clock as well as twice a day steroid treatments. Her ears began leaking pus from ear tubes that had been placed when she was less than a year old, and she required twice a day ear drops in both ears.
To add to the fun, my oldest returned from the hospital with head lice, which promptly spread to my husband and younger child.
Between the eyedrops, which couldn’t be given at the same time (one might be washed out of the eye by the next one)….
…the twice a day medication for both the oldest and the youngest, which neither one wanted to take…
…the ear drops for the youngest…
…the nebulizer treatments around the clock…
…the lice shampoo and hours of hair combing…
…no adult in the house knew if we were coming or going.
To prevent medication error– because otherwise, no one knew what had been given or to whom– we had spreadsheets that we initialed when we finished giving something to a screaming, struggling child. Before giving anything, medication bottles, some with similar names, were checked and double checked, and then triple checked.
At one point, I found my partner saying the youngest child’s name over and over again, in a daze, finger tracing it on the bottle.
Somehow, some way, no one got ear drops in their eye, or eyedrops in their mouth, or a another child’s medication. No doses were missed.
No one had a bad reaction to the medications.
We. Were. So. Lucky.
These days?
The youngest is on two medications plus a vitamin. One is over the counter. One isn’t. The youngest still can’t swallow pills, despite being in middle school, so ever increasing amounts of liquid is required for their consumption. Sometimes they still gag, even with the liquid– and they are the “neurotypical” child.
The oldest takes 4 medications that are prescription medications currently that are essential for health and behavior (and parental sanity), and 2 more that help with other conditions and self esteem/psychological issues. All of those medications are pills or tablets, and until last year, they had to be chewable or have the ability to be crushed or ground or emptied out of their capsule.
Due to resistance to medication, size (at 18, my oldest is not small), and strength, medication times and dosage forms need to be optimized. Resistance to, for instance, injectable medication, would not be easy to overcome. Resistance to taking medication more than twice daily is substantial.
You know what?
We are still lucky.
We can afford expensive medications that do not have generic equivalents.
We aren’t using a G tube or GJ tube to administer medications, and worrying about clogging the tube.
We haven’t had an adverse reaction to dyes in the medications.
We haven’t had to worry about anything in the medications other than gluten— my oldest isn’t on a ketogenic diet, and doesn’t have a metabolic disease that we know of.
We haven’t had a really bad medication side effect.
And yet.
Sometimes I think we balance on a homeostatic ‘knife’s edge’, caught between a desperate longing for medication optimization for health and behavior regulation and a desperate fear of changing my oldest’s medication regimen and what that means in terms of possible challenges.
Every suggested change, even just a change in dose of an existing medication, brings up a whole host of fears or objections. A need for an antibiotic is a change in schedule, a new thing, a new set of objections, a change in routine. A possible interaction with the medications that my oldest is already on. A possible contamination with gluten. A probable episode of resistance.
Even as a physician, knowing how important it is to have the answers to these questions– knowing how much of pediatric medicine is “art” rather than “evidence based”, I find it hard to ask the questions that I need to ask when I’m sitting in the parent chair:
Is this necessary, or can we wait and see?
Is it common for this medicine to interact with the other medications my oldest is already on?
Any gluten in this medication?
What are the alternatives to your proposed medication change?
What exactly are you hoping will happen with this medication change?
What are the potential risks of your proposed medication change?
What is your follow up plan for this medication change?
I have to remind myself to breathe out.
To advocate.
To keep my questions focused on the present rather than future possibilities like ‘what if he refuses to take this medication, then what do I do’?
To get out of the parent chair if I need to.
To get between the physician and the door if I have to.
To use my voice because my oldest can’t use his. Not for this.
To let his physicians know without making a big deal about it just how much effort we put into medication administration.
In this, too, we are lucky: my oldest has fantastic primary care. I rarely have to get between his physicians and the door. I rarely feel like we have not been listened to.
And when I am the one on the physician’s stool, rolling around the room with abandon, examining my patients? When I watch another parent’s throat work as they swallow after I propose a medication change or new medication? When I watch a nurse begin to position themself between me and the door?
I want to tell them that it’s all right.
I want to give them permission to advocate.
I want to tell them to use their voices, because the children need advocates. The clinic I work for is fantastic, and can do care coordination all day long. What we need as health care providers is someone to remind us what it’s like at home, day to day.
So I smile, and invite them to lean against the door. To bring out their list of questions. To make sure I haven’t missed anything pertaining to the present moment and the medications.
To remind me not to take a medication change lightly— and to celebrate successful changes as the milestones they are.
