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

Monday, February 16, 2015

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."


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. 

medical, epilepsy, cancer, planner, calendar, appointments

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."

medical, epilepsy, cancer, planner, calendar, appointments

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.

medical, epilepsy, cancer, planner, calendar, appointments

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.



Geertrude said...

So sorry to hear this! Having a sick child is so hard... Wishing you all the strength you need!

paperscribe said...

So sorry to read this. We have a child with epilepsy, and for our family it is a continuous and iterative process to find the right medication and dosage. Your organizational tools are right on. Note: we did invest in a seatbelt cutter for our car in the event our child needs to be moved during a convulsive episode and we cannot access the seatbelt latch. We also laced medical ID alert tags into his shoelaces. hth

paperscribe said...

Another tip: we contacted our local 911 emergency network to update our address info for a child with epilepsy. Hope these fallbacks will not be necessary but the peace of mind is worth the effort for us.

Christine Cortese said...

Paperscribe said what I would have said. A friend's son developed epilepsy as a child, too. Now he is 19 and in college. He lives a pretty normal life.

KariP said...

My prayers go out to you. I cannot imagine what you are going through, but as a child dealing with this, I can totally empathize with him. Had my first seizure and diagnosis at age 5. I'm no longer on medication, but all the battles and adjustments just make every little victory that much sweeter.

Angie Forte said...

I confess. I saw part of your blog title and didn't want to click it because I didn't want it to be about seizures. My 15yo daughter experienced her first one about 10 days ago. It still haunts me as I was the one that found her. It was totally out of the blue with no family or personal history. We have an appt. with a neurologist tomorrow. The ER doctor put her on Keppra until we could get to the neuro. I'm hoping he can adjust her medicine as she's always tired and sleepy. We are praying for answers too. This is so new to us and a normal life without worry is hard to imagine right now. Leaning really hard on God during this. I hope you get answers too. I am finding comfort in the moms and people that have learned how to life in spite of this. Thanks for sharing!

ZoeAnn Yussman said...

Hate that you and your son have to go through this! My 21 yr old daughter has epilepsy as well. She is thankfully controlled on meds- praying your son can also be well controlled with MEDS! I have exactly what you suggested in my planner- mostly because of your previous blog posts! It's really important to track med changes as well. Thank you for sharing your challenges and your planner ideas! Praying for you and your family-

Unknown said...

I am so sorry that you and your family are in this. I don't have any advice, just wanted you to know you are in my prayers.

Giftie Etcetera said...

I'll be thinking about you, Angie, in a special way!

puggerhugger said...

I am pretty much a newbie to planner life (Only have two filos so far lol) but this post was so timely and helpful that I can't help but send my thanks- I read this exactly one day after my oldest son was released from the hospital with a diagnosis of schizophrenia. Overwhelming between trying to organize dr visits, medicines, SSI application, and just structuring his days to mesh with mine and my two other teens... Anyway, I feel your determination, and I understand how our attempts to organize and add structure are helpful in calming our anxieties for our kids. Much love - J

Angie Forte said...

Thank you! I appreciate your sharing your experience and for your thoughts. I can sympathize with parents that have to experience watching their children seize. Thankfully meds are making life mostly normal :)

Amanda Evans said...

I am so sorry your little guy and whole family is dealing with this! Thank you for sharing the journey and these really thoughtful ways to navigate through such a difficult experience. I love your tip to schedule in time to relax and be together - what an important one! Self-care can be so easy for moms to put on the back burner, but of the utmost importance to have the strength through it. Thank you for linking up at #MeetUpMondays. Nice to meet you and follow along now, with prayers for your family!

Lilyeuhh said...

Thank you for sharing this experience. As an epileptic myself, I know how difficult it is for the family, especially when seizures are spectacular (general tonico-clonic seizures).
As doctors will ask about these, I really recommend to log seizures (date/time/type/time of consciousness recovery), medication (name/dosage/any undesirable effect), tests (date/doctor/results), but you already mentioned that (^-^). Do you have a particular layout for tracking them?
I also recommend a good lifestyle with enough sleep, least stress as possible and, of course, a good medication compliance (I learned it the hard way...). In most cases, epilepsy disappears after childhood, so hopefully your little one will be fine.
In the meantime, I wish you all the physical and mental strength to manage this.