September 19, 2018, is a day that our world changed. Reine had a tonic-clonic seizure in my arms in the middle of the night. She was diagnosed on October 18, 2018. She was placed on medication as soon as she was diagnosed with epilepsy to help try and control them.
I had a lot of information thrown at me over the weeks that followed her first seizure (that I witnessed). There were phone calls, family history taken, tests ordered, appointments all over the place. I was researching things and had so many questions. For every question I had, I was asked 3 more by Reine’s specialists and doctors. I was clueless about the questions I was being asked. I felt stupid and helpless. Neither one I am comfortable being.
Common tells in neurotypicals
- Odd feelings, often indescribable
- Unusual smells, tastes, or feelings
- Unusual experiences – “out-of-body” sensations; feeling detached; body looks or feels different; situations or people look unexpectedly familiar or strange
- Feeling spacey, fuzzy, or confused
- Periods of forgetfulness or memory lapses
- Daydreaming episodes
- Jerking movements of an arm, leg, or body
- Tingling, numbness, or feelings of electricity in part of the body
- Unexplained confusion, sleepiness, weakness
- Losing control of urine or stool unexpectedly
When I asked about seizure tells for those on the spectrum with Reine’s types of seizures I was told she wouldn’t have any. Once again I felt helpless. How was I supposed to help her and I navigate this??
We were missing medication doses even though I had alarms set. If we were out of the house or someone shut off the alarms before the meds were taken she missed doses. I was forgetting questions I needed answers to because there was only so much my brain could retain at once. I was also supposed to be monitoring her side effects from the meds. Everything was scattered in various notebooks and misc pages. Enough was enough.
I created what I call Reine’s Seizure Journal. My husband rolled his eyes when he first saw it. However, it proved to be invaluable for myself and for Reine’s specialists and doctors.
Her journal consists of a yearly glance with her seizure activity, monthly calendars, daily medication trackers that also have her current doses as well as when she began taking that dose. The dates of the progression of meds and any side effects from the meds. It also has a daily journal , trackers, and a notes section for questions/answers/information.
In the beginning, I was using monthly inserts with just enough weeks in them for that month. It became apparent that this was not going to work long term pretty quick. Reine was hospitalized in November of 2018 for several days. Pulling out 3 different inserts to answer their questions was getting the job done but not efficiently as I wanted. When you are in a hospital setting, their time is short in your room. They want the answers or your questions quickly so they can move on to the next patient.
I started using a Japanese planner called Hobonichi Weeks Mega for my own personal everything planner in February of 2018. I love everything about this planner. From the size, the layout of the planner in general, the ability to change things up in the weekly portion, the notes section (that gave me the ability to section off into other things), and that it was a full year in one book. Took me a hot minute to realize that this would also be absolutely perfect for Reine’s Seizure Journal as well but I did not need the over 250 pages of notes in the back. I decided to use a regular Weeks because it only has 69 pages of notes in it. I have spent the past 2 weeks slowly transferring everything from the monthly inserts and the bullet journal system I have been using since December of 2018.
Yearly Glance Pages
I use the yearly important dates pages as a way to see Reine’s seizure activity quickly and all in one place.
I use the monthly calendars for 3 things
2. Medication tracking (along with medication and dosage information)
3. Upcoming neurology appointments
Weeklies are for a quick daily journal and tracking information. Because of the daily journaling, we (doctors and I) saw that Reine does have tells for her seizures and we learned that she has 5 different kinds of seizures. I use the left side of the weeklies for a quick daily recap of her day. The right side of the weeklies have a tracker that I use for her tells with ample space for me to write any notes about the day that I think is very important. I also write when someone is sick in the house. Reine’s white blood count is lowered with the medication she is on. Any illness/seasonal allergies can lead to increased seizure activity). The journal allows me to see when she needs something more from me (like extra patience, extra snuggles, help with communicating her needs, ramping up for her tonic-clonic seizures).
This section will be used for any questions I have along with their answers, any research I have done or need to do, and anything pertaining to any testing or hospitalizations that Reine has to have.
With everything laid out like this, I am able to see patterns, answer any questions, ask my questions and write my answers down and have everything in one easy to grab “book”. Reine’s doctors and specialists have even taken my inserts and books to quickly show other doctors and even parents them in hopes that others will do something like this in the future.