Navigating Epilepsy Part 1: Searching for a Diagnosis

childhood epilepsy

We had almost finished the first year of raising triplets. And it was the hardest thing we’ve ever done in our life. When the triplets were 11 months old it was the victory lap of making it through a huge milestone in parenting.

Until all four of our children came down with an illness.

Our initial reaction was that it was a typical cold. That we just needed to hunker down and get through it. But 24 hours in, it was clear this was more than just a cold. Our children were a hot mess — fevers, runny noses, coughs, the works.

We hauled all four into the walk-in clinic (a feat in itself). The kids had strep and influenza tests, and we casually mentioned to the doctor that our son Harrison had been having a few random body twitches that didn’t seem normal. But he didn’t have any while in the office. And the doctor told us to keep an eye on him and it would probably go away as he got better. 

Something Is Not Right

Flash-forward 24 hours, we had received results back. Positive for both Influenza A and strep throat. We started antibiotics, stocked up on Tylenol and Motrin, and ran the humidifiers.

But Harrison continued to have random body twitches and head drops. And finally, one day a family friend was able to get a particularly big episode on video.

Armed with the video as some solid evidence, I rushed back to the walk-in clinic and met with the doctor again. After one look at the video, she called to the main hospital and we were heading in for an emergency EEG with the neurologist. 

The First EEG

epilepsy

My husband arranged for my parents to watch the other children and he rushed to meet me at the hospital. We sat together, silently waiting for the doctor to give us an update as our son was sleeping in my lap with a pile of wires glued to his head. My husband would push a button any time we noticed a strange movement, and we both were trying not to Google or bring up the word seizure.

To say we were living in a parent’s nightmare would be accurate. We had no idea what was happening.

Why was our perfectly healthy little boy was suddenly so exhausted he could hardly sit up? Why was he was having random body movements we had never seen or heard of before?

Finally, we received an update from the doctor. He told us the EEG was clear, and the strange movements should start to go away as he recovered from the illnesses. We breathed a sigh of relief.

Ok, that’s not so bad. At least it’s only temporary, right?

The wires and glue were removed and we were discharged. The doctor told us to just keep an eye on him, and to wait it out until he healed. 

A week later, things had not improved and had actually gotten worse. Harrison began having more frequent and noticeable body twitches and mini head drops throughout the day.

Harrison was still sick, but this level of involuntary activity just didn’t seem normal. So we took him back to the hospital. He was admitted again — and underwent a series of labs, a CT scan, another EEG, and a spinal tap.

There was no obvious underlying condition to cause these involuntary movements, so we waited anxiously for results of the EEG. Again, the neurologist said there was no epileptiform activity on the EEG, and that he was “definitely not having seizures.” But instead called them myoclonic jerks that would disappear as he healed. They said that a spike in the pattern could potentially lead to future seizure activity, and prescribed the first medication — Clonazepam. 

Armed with the assurance that he was not having seizures and the medication, we took Harrison home. In the next few weeks the myoclonic jerks got worse and we upped his medicine in response.

epilepsy

We also tried the chiropractor and craniosacral therapy, all of which seemed to help. Over time the jerks decreased, and ultimately disappeared by summer. 

Fast-forward a few months, and I received a gut-wrenching call from daycare. The myoclonic jerks were back. Harrison had some weird body twitches while sitting in his highchair at lunch. I remember standing in the break room at my job trying not to break down. I instructed his teacher to keep track of how many times it happened and raced to pick him up. 

Finally, an Epilepsy Diagnosis

I had to basically beg the neurologist to see us early and desperately described what was happening over the phone. These seemed different than before, more intense and without any illness or other cause.

The day of our appointment, we were having breakfast at a restaurant near the hospital when Harry had a sudden head drop. He hit his forehead hard on the table. The entire restaurant watched as we tried to console our sweet boy, who had no idea what had happened.

At our appointment, I refused to leave without having an EEG scheduled. With the assurance that “the odds of him having seizure activity would be like being struck by lighting twice” the neurologist reluctantly agreed to set up a follow-up EEG in a few weeks. 

After his third EEG in mid-August, we finally had confirmation that he was in fact having seizures. He started on a new medication, Topamax, because the previous Clonazepam had made him seem like a zombie. The Topamax seemed to reduce the number of seizures he was having per day, but he was still having them. We decided it was time for a second opinion, and scheduled an EEG and neurologist appointment with MN Epilepsy Group for October. 

epilepsyA Second Opinion

The progression of seizures increased and Harrison’s care moved to the Minnesota Epilepsy Group. In October 2019, Harrison and I traveled to Minneapolis for a keep study. His pediatrician was concerned about his incredibly large tonsils and potential sleep apnea. We were hoping if we improved his sleep it could potentially help reduce seizure activity as well. He was such a trooper and did pretty well sleeping with all the wires, nasal cannula, and crazy sleep hat on all night. 

The next day he had an EEG. It was a quick 60-minute test, and he had multiple seizures while sleeping.

It is clear at this point that his seizure activity was increasing. The doctor suggested to add medication to combat it. We increased his Topamax, and discussed possible additional medications with the Epileptologist (a neurologist that specializes in dealing with seizures).

This new doctor confirmed that Harrison was in fact having seizures during every previous EEG. This was especially hard news for us. We felt like we blindly listened to the previous doctor and should have reached out for a second opinion sooner. A lot of “what ifs” come through my mind when I think about this, but I remind myself that we only did what we thought was best at the time based on the information we had.

Trust Your Instincts

Nothing can stop the mom guilt from trickling in and making you question everything. From that moment on, I vowed to be an advocate for my son. No longer would I blindly follow orders without first fully researching and gathering as much information as possible. I would ask more questions and push for more tests. We left with a list of medications to research, a plan for his future visit, and confidence in his new medical care team. 

To be continued in Navigating Epilepsy Part 2: Living with Daily Seizures.

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Traci VanBruggen
Traci is a mother of four kids and two pets and lives in West Fargo with her husband, Dave. She has 4 children : Nora – aged 6, as well as Harrison, Hendrik and Heath – 3 year old triplet boys. Throw in the cat Attila - age 12, and Bulldog/Lab Abe- age 11, and their house is pretty much the nonstop chaos you would imagine. Traci works part time out of the home as an interior designer & sales consultant at Floor to Ceiling Carpet One in Fargo, ND. Working part time gives her the flexibility she needs to handle appointments and activities with the kiddos, but also have a place to turn on her “creative brain” and give the “mom brain” a break. Her hobbies include home renovation projects, a relaxing soak in the tub, and getting coffee from Caribou and then sitting in the van in silence. Having triplets has really changed the way Traci and Dave run their household and parent their children. Efficiency and schedules are key, and one of her passions is helping new moms of multiples navigate those first few challenging years. One of her sons, Harrison, has cerebral palsy and intractable epilepsy. Having a child with complex medical needs has helped fuel her other passion of spreading epilepsy awareness and increasing support for parents of children with special needs. Writing about her sons journey has been a way to express her emotions and reach other families going through a similar situation. You can read more about Harrison on his facebook page Hope for Harrison. You can read more articles from Traci here.

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