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Maggie’s Journey: Waiting to Know

For all of those out there who are waiting for doctor’s appointments for loved ones, scared of what might be happening, it’s okay. For all of those out there who are waiting for their child to hit milestones that their peers already mastered, just breathe. For all of those trying to conceive mamas waiting until it’s time to take another test, the days will pass. For all of those waiting for news of loved ones sequestered to an isolation ward in a hospital, the news will come. For all of those out there waiting to know something significant about yourself or a person you love, just keep breathing.

We all have loved ones struggling with all of those scenarios. For the majority of people, you probably do, too. In your life, whether with family members, coworkers, or personal friends, there are too many people out there waiting to know something critical about their health or the health of a loved one.

I know about waiting. Most of my waiting for medical news is about my oldest daughter. Maggie’s journey from initial signs to diagnosis to treatments to today is not a pretty one, but I think for parents experiencing similarities at the various stages, it could help to see how things could transpire over the long run. For myself, I would’ve felt better reading something like this during those early days, even if it didn’t look hopeful at first.

At 18 months old, we thought Maggie was having funny twitches, or that she was surprised so she’d raise her arms when she was peeing because she typically had a wet diaper. We took her to her pediatrician, but she didn’t have any of those twitches during the appointment and we didn’t have video recording it, so she could only go by what I described. In an abundance of caution, she made a referral to a neurologist, just in case. Finding the neurologist was difficult. For one office, there was a three-month waiting period. I remember crying to the receptionist about how scared I was, and she was sympathetic, but that still didn’t change the fact that there were no open slots in her calendar. I called another neurology hospital and their waiting list was six months! I made the appointment just in case we wanted a second opinion.

Her initial appointment with her first neurologist began with an EEG which confirmed without a shadow of doubt frequent seizures. I held her during the test and was disheartened to learn that she was having seizures in my arms when I didn’t even realize it because she showed no outward signs. We also went inpatient to the hospital for a battery of tests including an extended (72 hour) EEG, MRI, blood work for metabolic testing, mitochondrial testing, genetic testing, and a spinal tap for I don’t remember what testing. The EEGs confirmed epilepsy, but the battery of tests was all inconclusive. There was no identifiable metabolic, mitochondrial, or genetic cause, no brain tumor in her brain, no identifiable reason at all. I asked the next logical question: what do we do? I asked about keto, having heard that the ketogenic diet could be a successful treatment option. Her neurologist said the first step was medications, and if three or more medications failed, then we could try keto.

If I knew then what I know now, I would have started with keto. I would have insisted on it. Her first medication changed her personality. She went from being a happy, smiling girl, to an emotionally distraught and noncompliant child. The crying and tantrums during those early weeks were unreal and trying to get her to take her medication in the first place involved either trickery by mixing it with her drinks or trying to use the syringes to drink it, which she would often spit out. We attributed the behavior changes to the seizures, not the medication. Since then, we had weaned off, went back, then cold turkey that specific medication and I know with absolute certainty that it was that specific medication, which had minimal effect on her seizures, that impacted her emotional response, for about two years.

Researching seizure medications is an exercise in self-torture. They all may tote seizure-reduction benefits, but they all come with horrendous side effects. Some even have FDA black box warnings and we refused to try any of those. Because of her age, recommendations were to use medications that were not FDA approved for her age, which we did anyway because our options were so limited. Some had terrible reviews from other parents warning of behavior changes and cognitive lapses. Most lead to learning difficulties. With the seizures and the medications, sometimes it can feel like a chicken and egg scenario. What came first? What caused this? Are verbal delays because of medications or the condition itself? If I could go back in time, I would not spend the hours that I did combing through research websites and parent forums. All it did was add to my anxiety. In the end, they all look terrible, but uncontrollable seizures are worse than medication side effects, provided seizures are controlled. Besides, seizures act as a hard reset, wiping away learning gains, and inhibiting learning.

A strategy that neurologists frequently use in uncontrollable seizures is called stacking medications. Some medications work better in conjunction with another. With her initial medication, she kept that and added a new one. She still had seizures. She kept those two and added a third, which made her break out into a full-body rash that turned out to be an allergic reaction to the third medication that seemed to have the greatest impact on her seizures. We replaced the third with another. She still had seizures. Then we topped off her cocktail with a fourth. If I knew then what I know now, I wouldn’t have allowed more than three medications at a time. I would’ve insisted we wean off anything that didn’t show a significant impact on her seizures. Medication-wise, I felt like my daughter was the subject of a science experiment, adding more and more with great hesitation to remove those that may not be effective. Meanwhile, her seizures remained uncontrolled.

Before we knew it, six months had passed and it was time for our back-up appointment. I don’t know if they shared the same fail-three-meds-before-keto policy, but it didn’t matter because we had failed more than three medications by that point. We started with a modified Atkins diet (MAD) while keeping her four medications, and it failed because, with daycare and external factors, we couldn’t control her environment and Maggie was determined to sneak food any way she could. Child safety locks be damned, she’d figure those out, which made me feel better about her cognitive problem-solving skills. She may not talk, but she’s intelligent in her way. That failure on MAD was invaluable and taught us skills in diligence and food prep that made the keto diet successful once we reached this stage.

For the next six months, we continued with meds and periodic appointments. She was due for another extended EEG in December 2019, which brought us our next significant diagnosis. Her initial diagnosis was generalized epilepsy. By generalized, I mean her entire brain would light up like a Christmas tree. Her seizure activity was not limited to a particular part of her brain; it impacted all of it. Since Maggie had shown numerous seizure types that were medication-resistant, demonstrated cognitive declines as evident by missing numerous developmental milestones (in addition to speech), and most indicative, her EEG results indicated a “spike-and-wave” pattern, she hit the trifecta of symptoms that indicate a rare and serious condition called Lennox-Gastaut Syndrome (LGS).

Like reading through the medical research and testimonials about anti-epileptic drugs, reading through information and online experiences about LGS, in the beginning, was emotionally overwhelming. It led to a tremendous amount of worries about her future. As much as I wanted to know, as scared as I was, if I could go back, I wouldn’t read about it at the time of diagnosis. I would wait until I could look at it objectively instead of emotionally.

Her LGS diagnosis did lead to some positive outcomes. By having a concrete diagnosis, the medication guessing game was reduced. Different anti-epileptic medications work best for different conditions, so it eliminated any trial and error with medications that would be ineffective for her specific diagnosis. Concerning keto research, it showed the potential of much improvement; however, even most LGS kids show much improvement with keto, it doesn’t have the same dramatic improvement as a similar rare condition called Dravet Syndrome. Either way, it showed us an alternate treatment plan that we have since begun and has shown improvements. Just as projected, she is not seizure-free, but she has made many gains cognitively and in her seizure-reduction, by adding the ketogenic diet to her treatment plan.

As I write this, Maggie is a month away from turning four years old. She still doesn’t talk, still has seizures every day, but she has shown more gains since we began the ketogenic diet than any other treatment form. Maggie’s medical journey began at age 18 months, and it has been a long and bumpy road. In the beginning, I would not have imagined the many challenges we would face. I’m the type of person who likes a roadmap of what could be. I hope that sharing Maggie’s roadmap is helpful to others.

Her journey is still far from over. There are still unexplored treatment possibilities that we may consider down the line. If her seizures average to more than five a day by her March check-in, then we will likely swap one of her medications with one that I did not want to try in the beginning, but having tried so many others, I’m willing to try whatever it takes to eliminate her seizures. After all, when I asked her speech therapist who has LGS experience in her caseload what Maggie’s prognosis could be based on her experience, she said it entirely depends on seizure control. If Maggie can control the seizures and eliminate them, she could learn. If she doesn’t, she’ll continue to struggle.

A few years back, I watched Any Given Sunday, a football movie starring Al Pacino as the lead coach to the fictitious Miami Sharks football team. He gives an empowering speech about how football is a game of inches, not yards. He said, “On this team, we fight for that inch. On this team, we tear ourselves, and everyone around us to pieces for that inch. We claw with our fingernails for that inch cause we know when we add up all those inches that that’s going to make the difference between winning and losing, between living and dying.”

Maggie’s progress is not measured in yards. It’s measured in inches, fluctuating capricious inches, but we fight for those inches. Every inch, every learning gain, every day of reduced seizures, is a win. Every step back, every learning loss, every day of increased seizures, is a struggle and opportunity to claw forward and fight for growth, one painstaking inch after another. The journey is not easy. Take a deep breath, take a step forward, even if it’s just an inch.


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