5 Things We Learned Managing a Toddler with Epilepsy At Home

 

There were some things that caught us by surprise when we brought the boy home from the hospital after our first long visit. At the time there was so much going on, our focus was being pulled in so many different directions, we had to figure these things out on the fly. And being that we know there's so many others in our shoes, it made more sense to me to share. So here are the 5 most important things we learned bringing our boy home from the hospital:

1.    Write Everything down, keep it around! 

The first lesson was balancing the new schedule. The number of appointments we had to maintain tripled with each new doctor. We started printing calendar pages off of a word document and putting 2 or 3 months at a time up on the fridge to keep track of the appointments. We also put them into a shared calendar on google so that we could always see things coming well in advance and prepare accordingly. Finally, we put together a binder of all the information we got from all the doctors and service/care providers, and keep it on the kitchen counter. Anything to do with the boy’s new needs goes in there and it is always easy to find. We shoot for comprehensive simplicity.

2.    Write That Meds Schedule Down!

Taking care of this kid with the new schedule was hard and sometimes scary. We found that it’s wise to have a copy of the boy’s medication schedule with the dose and suspension information listed on the fridge. On this sheet would also be the same information about the rescue medication, as well as how to administer it, because there are a few different ways depending on the type. It’s handy for reference, but also if we’re having someone in to watch the boy, it’s good to make sure the information they need is easily accessible. This piece of paper can be given to a paramedic if the caregiver needs to call an ambulance. Obviously if I thought that something might happen, I wouldn’t leave my kid with someone else. But it makes them feel better to know we’ve thought of everything. I also have a copy of this information sheet laminated in my diaper bag. We also keep a short video of one of his seizures on our phones as a reference in case someone is concerned about identifying one. Even for ourselves, it’s harder to make a mistake and easier to make adjustments when the information is clearly laid out in front of our eyes.

3.    Alarms, Alarms, Alarms!

Every parent of a tiny person knows that schedules are life. We had to figure out how to work naps and meals around 5 relatively set-in-stone medication times for the foreseeable future. I am glad I had a Fitbit before this started, and I’ll likely always have one now. The watches can have up to 8 different alarms set per day, so we put times for 5 minutes warning on the naps and meds, and eventually tossed the nap alarms as the schedule started to become more normal. Initially I had these alarms on my phone as well (which is a good option if you don’t have or want a smartwatch), just in case I missed my watch vibrating, which happened occasionally. I also started putting an alarm on for when I’d be packing up the family to go somewhere, to remind myself to pack along the meds and seizure log page. The times we forgot them were annoying, and that effectively ended our trip, so as many alarms as was reasonable to double check everything made the end result better.

 

 

4.    Pharmacies!!! This one is Important

I wrote another post for this one Here because we found this to be very important and somewhat multilayered, but here is a summary. Pharmacies are the centre of our world now. We learned a couple things fast. Compounding pharmacies make suspensions of medications, or liquid versions of the drug out of the pill form. Regular pharmacies just dispense drugs without changing them. Compounding pharmacies generally have standard business hours for when they have staff qualified to make compounds (not all pharmacists can or will), and some pharmacies are actually closed outside of those hours as well. Not all, but some, which means if you order a refill on Friday, you may or may not be able to pick it up on Saturday, so know how much of a time buffer you need when ordering meds, and know what your pharmacy's schedule is. The pharmacy generally has one or two flavoured sugary ‘syrups’ that they use for the suspension. We tried one pharmacy that had two flavours, the boy hated both of them. So we moved to another that we somehow managed to find 20 minutes closer to home (thank goodness) that had a different flavour that the boy accepted. What a relief. 

5.    Think About Who Comes Second

Your relationship with your partner will take a hit, but it’s not the end of the world if you don’t let it be. This is something I saw relatively often as an Education Assistant, and when the boy started having his seizures, we were aware and a little better prepared. Having a kid that is ill for a long period of time or who has exceptionalities is a full time job, on top of being a regular parent, and whatever other career you and/or your partner might have. The number of supported kids I saw with separated or divorced parents was huge. Without a doubt, this life wasn’t what they had in mind when they were young and in love. Arguments will happen because aspects of how to parent this kid will change dramatically compared to average kids. Priorities and opinions will differ and it can be challenging to maintain that united front. This is an opportunity to evaluate how functional your relationship is, and where it can be improved. Invest in relationship counseling early so that you're prepared as a couple when things get harder. If you or your partner have benefits through work, it's worth checking to see if your employee benefits package has some kind of counseling coverage or a service the employer has a deal with in order to take care of employee mental health, it's more common than expected. Often these services provide information on where the benefits can be used and are a great starting point. This is a good time to figure out how best to work out disagreements and better your communication. Both parents will encounter moments of ‘crazy’, because your kid is experiencing something huge and it’s hard to watch. Learning how to love each other through those times, and support them until they come back around is key. I’m not suggesting that all partnerships are meant to survive, or that a relationship ending is a personal failure, not at all! Some are better apart, but it’s worth making sure you are doing everything you can to follow the right path for your family. Either way, no one else will know what you’re dealing with as well as your partner will, so it’s worth the effort to support and maintain that ally.