Epilepsy Awareness Day is Every Day for Us Now

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By Samar Katnani, Syngap Mom

Once again, a day late. Yesterday was Epilepsy Awareness Day (March 26). Not a day that I was aware of last year. It was only after Reema was diagnosed with epilepsy, and I am now more aware of epilepsy than I had ever hoped to be. If you care to read this, please do, but I think this is more a cathartic act for me than anything else. And this is just our story (so far); millions of other parents and people have their own.

Reema’s first seizures were in May 2022, about a month after her first electroencephalogram (EEG) that showed abnormal activity but no seizures. She had developed a fever while at the playground (unbeknownst to us) and all of a sudden crumpled to the ground. Over the next two days, she would drop suddenly to the ground seven more times. It was terrifying. We spoke to her neurologist who said that these were definitely seizures and that we could choose to begin medication–an antiepileptic drug (AED) that is commonly prescribed to Syngapian children. We agreed and had the prescription filled.

By the time we got the medicine, Reema’s cold had gotten better and we had not seen a seizure for a week. I picked up the bottle of medicine from the pharmacy. I looked at the big pills. I looked at the lengthy, small-type print pamphlet that included a laundry-list of side-effects. I panicked. I sat with the pills and some yogurt and applesauce at the dinner table and panicked. I texted another Syngap parent (you know who you are), who graciously texted me back in the middle of her kid’s bath time and supported me through it. Once Marco was in bed, I looked at Jose and burst into tears. I couldn’t do it. So we didn’t. We decided to wait. I’m grateful for Jose’s support in that moment.

About a month went by and then one day coming back from Coney Island, I saw Reema’s eyes roll back on the subway. Very briefly. 2-3 seconds tops. We started seeing them daily, especially at meals, and they eventually got more severe. Not longer, just more powerful, where Reema’s head would fall backward. Waiting and watching for seizures as a parent is debilitating. Reema would often have seizures while staring at me, smiling or trying to interact. To this day, I still cannot fully enjoy a moment where our eyes lock without bracing for a seizure, even though it has been months since it has happened.

We once again had a choice to medicate the seizures, but it was a hard choice to make. I had read about how many AEDs kids were on, how one would fail and another would be added, the side effects, the possibility that the AEDs themselves were causing seizures, the fact that seizures would not even be fully controlled with so many meds. So we opted to do another EEG before starting medication, to get more information. We learned that Reema was having focal seizures, coming from one place in her brain. Her seizure type was atypical absence seizures, which are quick eye flutters, eye rolls, and then loss of head control–from least severe to most. Our neuro recommended that we start with a different AED than originally prescribed. We gave Reema her first dose in the hospital. At the time I felt ok with it. By the time we got home 24 hours later, I was wracked with guilt.

I had previously learned that diet and CBD could be natural ways to control seizures. I was adamant to learn more about these methods after Reema’s seizures in May. But then when Reema’s seizures stopped, I relaxed, convincing myself that epilepsy was not in our near future, a delusion intended to protect my already exhausted head and hurting heart. So I wasted that precious month, where I could have researched, learned and implemented; instead now my daughter was on heavy-duty drugs at age 2. I beat myself up pretty good for a while over this.

The drugs improved Reema’s seizures at first. They did not completely go away but she was in better spirits and had a developmental burst. After a month, her neurologist suggested increasing the medicine since Reema was still having 3-4 seizures a day. That day was horrific. Reema had 10 seizures in a row after her morning dose and passed out in her chair. The following month was terrible. Reema was having 15-25 seizures a day (that we spotted). I was positive that the medicine was the cause, not the answer. The neurologist said that she still had 4-5 other medicines in mind to try for Reema before we gave up, that seizure control was an art, not a science. 4-5 meds?! In my head I thought, oh hell no. These medications do not just leave your body when you stop them. They have something called a shelf-life, and can stay in your body for weeks, months after you stop. Many of them cause seizures when you wean from them. So trying 4-5 meds could mean years of failure, years of putting in and taking out medicine from Reema’s body with no guarantee of success. If we were going to experiment with our daughter’s health, I decided firmly we were going to start with non-AED options first.

We had previously asked our neurologist about the ketogenic diet, but were told that it would be too hard to implement with a 2-year-old. After the seizure increase, I demanded a referral to the epilepsy center dietician and asked to start Reema on the Modified Atkins Diet, which could be started at home. We started transitioning Reema off of milk and added sugars, which was not the hardest thing in the world. But then came limiting carbohydrates, including Reema’s favorite foods – Bambas and grapes. Neither could be on the menu. The next two weeks were a BATTLE. Reema would refuse to eat, holding out for grapes. She liked peanut butter too, so we started putting that on everything. Like everything. Some days we saw good seizure control, other days not so good. I had little idea what I was doing and received little support from the hospital dietician.

I needed help. Because we had days where Reema had no seizures, I knew this was something that could work. I just did not know what the formula was. So I sought out recommendations from parents on a keto diet FB group (I do not know what I would do without FB groups – shout out to all the parents out there that went through all this before FB groups and the internet, I’m awestruck!). We then paid thousands of dollars to work with a private dietician, a privilege not everyone has. We started a more traditional ratio (2:1, which means for every 1g protein or carb, Reema needs to have 2g of fat), we got signed up for a diet calculator, and got daily support.

Our journey with keto has been challenging. It takes a tremendous amount of time and effort, measuring out to the gram each of Reema’s meals daily and figuring out what foods and recipes Reema likes or does not like. We have a bucket of supplements. We prick her finger to test blood ketones and glucose often (luckily, Reema LOVES it – she gets giddy when it’s time for Keto Mojo!).  Lab work every few months (which Reema HATES – Jose and Jiddo take care of those appointments because I cannot handle them).

But it has been worth it. Reema went from being in the 3-10th percentile in weight (after dropping off suddenly from the 50th percentile at 6 months old) to now at 3 years old in the 60th percentile. She has gotten stronger and had incredible bursts in development. Her therapists have said they have never seen such a change from diet alone. We weaned her off her medicine (which was scary). And even though she is drinking syringes of olive oil every day, she loves eating so much more, I think because her seizures are under control. On the mornings where her ketones are low and we see seizures, she resists eating.

Reema’s last dose of medicine was on December 15. The last three months have been interesting. We have learned that pumpkin and butternut squash trigger seizures. Any type of sugar or sweetener, even those allowed on keto, trigger seizures. MCT oil triggered seizures.  Too many carbs without the proper amount of fat will bring seizures. Reema’s brain is so active that it requires a delicate balance to control the seizures, the slightest deviation can have an impact.

Which is a daunting thing to know. Reema is only 3. We have no idea if keto will keep working, whether her seizures will evolve, whether AEDs are in her future. We have a long road ahead of us and will have to keep observing, guessing, tweaking. There is no cure. We are always experimenting really. We are experimenting on our daughter. Which feels terrible in many ways. But we have little choice, so holding the control over these decisions is something we have to learn to live with. We have to remind ourselves that we are not acting recklessly. We are doing the research and making educated decisions. Parents have been the biggest source of information and led us to all the decisions we have made; knowing that makes me more confident in my gut. I am grateful for all the parents who have come before us who share their experiences and knowledge; I hope to be able to do the same for others.

Our next steps are to increase Reema’s ratio a little bit, not for seizure control but to see if we can improve her cognition a bit more. The other day she had a stomach bug and her ketones bumped up a little higher and she started making sounds that we had never heard before. After a week or so of that, we are going to introduce CBD oil. Or at least that is the plan. We’ve been planning to introduce CBD for some time now, but every change is anxiety-inducing. May I have the strength and may it turn out ok for Reema.

ETA: I would be remiss in not saying that we are also extremely privileged to have had a genetic diagnosis before the age of 2 and before Reema’s seizures started. Syngap seizures are unique and many can be missed, overlooked, or dismissed as behavioral tics. We knew what to look for and already had a neurologist familiar with the diagnosis. We were able to start treating immediately, something not possible for all families. Genetic testing needs to be made more readily available and doctors need to listen and trust parents more universally.