How to Control a Out of Control Medical Crisis: Our Adventures in Epilepsy

We've been struggling with my 6 year old for about a month and a half now. He seemed really sick. Tired and lethargic, forgetting things, and suddenly not doing any school work at all. I didn't know what was wrong.

I did know that four different people (two teachers, a parent volunteer at school, and the receptionist) contacted me with genuine concern. I knew he was forgetting stuff, being uncooperative about his worksheets even though school is easy for him, and sleeping all the time.

I brought him in to the doctor.

They tested, at my urging, for mono. No mono.

They tested, not at my urging, for cancer. No cancer. I cried a lot after I got that result.

I was relieved. I almost didn't go to the follow-up visit. I almost just stayed home and left him at school. But it was too late to cancel the appointment, so I showed up to avoid the "missed appointment charge."

Epilepsy.

The sleep-deprived EEG confirmed seizures - frequent ones. An MRI is scheduled, but since his are generalized (on both sides of the brain), he is at low risk for a brain malformation or tumor.

I did what I do. I began studying and planning.

I didn't know that 1 in 10 people have had seizures. I didn't know that seizures could be hard to see (but easier, now that I know what I am looking for). I didn't know that some people - about 1 in 1,000 - die from seizures. I had a lot to learn.

I also had a new, long to do list.

An MRI to schedule with the nursing staff. School excuses to turn in. School excuses to acquire. Prescriptions to fill. Support groups to join. Education to pursue. Teachers and school personnel to notify. Meds to give, twice a day, exactly 12 hours apart. Blood work to draw on a regular basis. Follow-up appointments. Etc.
The diagnosis of epilepsy had my life spinning out of control.

I needed a plan. I needed my planner.

Here are the steps that I used to control the out of control medical crisis my baby is facing. I hope it helps some of you, whether you are dealing with epilepsy, cancer, or some other diagnosis.

1. Get a planner.

I prefer paper. It is simply easier to write down notes and look at my entire month at once on paper.

My Surface Pro 3 allows the same ease of writing, but is not always portable or charged for doctor visits. Also, some medical facilities and tests, especially sleep-deprived EEG areas, do not allow electronics.

But for those using technology, just make sure more than just a calendar is available. A place for notes and easy note-taking is essential.

2. Have a space for appointments.

Monthly planning pages are great. I don't just need to know when the appointments and blood draws and such are scheduled. I also need to know about other things, like when the school field trip is so that my kid never has to miss something fun for an appointment that could be scheduled some other time. 

3. Designate a section of the planner for a log of everything dealing with the diagnosis.

I used my Project section and created a project called "Child's Name Medical."

In that section, I put:

*lists of current medications and dosages

*medical history
*running log of seizures, doctor's appointments, phone calls, and tests

*lists of things I would like to do, like sending the school nurse a link for a free epilepsy training or joining the local epilepsy walk in Baton Rouge on March 28th

*questions for support group or for upcoming doctor's appointments

*uplifting statistics

4. Have a task list.

I add all tasks to my regular errands list or task list. In my planner, I use the weekly pages for this purpose.

5. Relax. Schedule time for that, too.

I have been overwhelmed by the outpouring of love, support, and prayers that we have received. We are at the beginning of this journey, but people at the end of it, seizure-free for many years, have taught me that epilepsy can be controlled in most cases.

But I haven't relaxed much. So, yesterday, my husband and I got a trusted sitter and had a hibachi and movie date.

Those who read my blog all the time know that I am very open and honest about my struggles and successes (and, sometimes, complete failures...yikes). But it took a while to write this post. I needed that time to relax, first, and step away from the problem.

If you know someone with epilepsy or another serious health condition, or a family member taking care of them, please share this post. Maybe I can make someone's life at least a little bit easier.

Etcetera.