Reine’s Seizure Journal…September 19, 2018, to Present.

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
  • Falling
  • Tingling, numbness, or feelings of electricity in part of the body
  • Headaches
  • 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.

The Setup
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.

Monthly Pages
I use the monthly calendars for 3 things
1. Seizures
2. Medication tracking (along with medication and dosage information)
3. Upcoming neurology appointments

Weekly Pages
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).

Note Pages
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.

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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.

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When Regression Means More Than You Realize

Something changed in Reine in August of 2018. It seemed to come out of nowhere. She just woke up one morning and became a completely different person.

Reine started to pee her bed at night and herself during the day. She became disoriented and “zoned out” a lot. Her ODD tendencies flared without provocation and she reverted back to where she was before behavioral therapy. She was unable to concentrate on anything homeschool related. Reine actually lost knowledge. Everything we had learned in the past year was just “gone”. She could no longer remember things like her letters, their sounds, simple addition like 1+1= 2. She was doing 4 digit addition and subtracting prior to August. Her address and phone number no longer were memorized. Her stuttering that had completely disappeared was now suddenly back with a vengeance, frustrating her even more. She began falling, running into things, and tripping over literally thin air.

Most days were spent soothing the “beast” that had seemingly possessed my Mermaid. I spent countless hours rocking out so.much.laundry. My nights were often spent with me in tears because of the long days. I was just in awe and completely thrown that this was all happening. There was no way to research what was happening to us. I know it was just as frustrating for Reine.

Then on Sept 19, 2018, Reine had had a particularly rough day. She could not sleep soundly no matter what we tried that night. I decided the best thing I could do was to just sleep with her. I told her I would stay in her bed with her until she kicked me out of her bed (she is known for literally kicking others out of her bed in her sleep). I told her that if I was not her room when she woke up that I would be in my bed. In the middle of the night, I woke up as she pushed me out of her bed. I went to the bathroom and was going to go crawl into my bed when something stopped me dead in my tracks. Call it intuition, mother’s sense, whatever you want to, but something told me to go back into your room immediately. I listened and went and laid back in her bed. Within seconds, she had a Clonic-Tonic seizure in my arms. I knew exactly what was happening because my biological mother is epileptic. I knew exactly what to do with/for Reine. I never panicked or anything like that.

I contacted our family doctor at the time, along with Reine’s ASD specialists and we began the process of having her neurologically tested. Because of an insurance switch, things were not as easy as we had hoped they would be to get the diagnosis and for treatment afterward.

Thankfully her developmental pediatrician  at Kennedy Krieger was also a neurologist and Kennedy Krieger required Reine to also see Christine (her behavioralist) immediately. We were able to get one session with Christine before the new insurance company told us that Reine’s behavioral through KKI would no longer be covered.

On October 10-11th, Reine and I were guests for an overnight EEG study through Kennedy Krieger. The testing almost did not happen because of the switching of insurance coverage. I had to get Reine fast-tracked through everything. We had to leave our family doctor of 13 years for a new doctor that had to request that Reine get the testing through KKI and continue with her developmental pediatrician for follow up. We were granted a 3-month window for this. With this granted, we were allowed to proceed with the EEG study. It was a long 2 days for us as Reine had to be sleep-deprived for 24 hours prior to the testing. That meant I was also sleep deprived.  Reine had several seizures during the testing, including with strobe lighting.

Reine was officially diagnosed with unprovoked focal epilepsy with photosensitivity seizures on October 18, 2019. An MRI was ordered along with more behavioral therapy to help us navigate everything. Medications were decided upon. Then the new insurance company stepped in and everything medical came to a screeching halt.