keto Archives - Page 5 of 8

Always Something There To Remind Me

Epilepsy has infiltrated every aspect of my son’s life, from the time before he wakes up to when his head hits the pillow at the end of the day and beyond. Every new day brings with it reminders of his condition, and every interaction, every task, every breath carries inside of it a burden that he must overcome.

Before my son even leaves his bed, there is an occasional seizure streaming from the camera we installed in his room to the iPad at my bedside. When he comes out of his room, his first stop is in the kitchen so that he can take his first handful of pills of the day. We spend some time together, constantly evaluating his behavior to see if his brain is firing properly, looking for those signs to see if he is going to have a good day or a bad day. Every morning is filled with these little reminders of his condition.

From there, it’s on to breakfast. Usually once a week, we spend a few hours making batches of pancakes so that he can have a keto pancake with a small amount of fruit. The diet has a high-fat requirement that, if we can’t incorporate the fat in to the food itself, needs to come from a straight shot of oil. My son likes the pancakes because they incorporate all the fat and don’t require any extra oil. If there are no pancakes, breakfast, like most of his other meals, involves looking up each component to find the ketogenic exchange rate, cutting and weighing everything to within a tenth of a gram including, unfortunately, oil. Every meal is measured this way, so every meal becomes another reminder of the challenges he faces and the things he must do to manage his epilepsy.

Many other tasks during the day involve helping him stay focused, or breathing to keep his body under control, or sleeping to recover from the exhaustion that is always present on his face…all reminders, every time we look at him, about how present and real and exhausting epilepsy is.

Before he goes to bed, he counts out another handful of medicine before making his way in to his room with just enough energy to brush his teeth, put on his pajamas, and crawl in to bed. The wash of fatigue that swallows him as he is finally able to just switch off his brain serves as the final reminder of how much effort it takes him to make it to through his daily challenges.

As he drifts off to sleep, I know that we have to do it all again the next day.

There is more, though, to our day than just these negative reminders of my son’s epilepsy. There are also the reminders of how lucky we are.

Those pills that he takes, his first and last activities of the day, are keeping his seizures under control. The magic diet, with all the extra effort and measuring and restrictions, also helps his seizures and cognition. That he is able to read, and is learning at all, shows how much he continues to improve.

Every morning that he is able to get up and go to school, and the fact that his body is strong enough to ride his scooter to school, is nothing short of a miracle. That he has friends in school and that the kids are sincere when they say goodbye to him fills my heart with such gratitude, as does him having individual support in school and an essential, loving aid when he gets home. He has regained much of his physical ability, allowing him to ice skate and play hockey in the basement, two of his favorite things. Every time he puts on his skates or scores a goal in his stocking feet downstairs, it’s a reminder that epilepsy has not taken everything from him.

Tucking him in, these reminders and milestones make me grateful that we had another day together, and grateful that we get to do it all again tomorrow.

Advocating For My Special Needs Child

By the time my son started kindergarten, we had gotten him off another toxic medicine and he started to settle in to the ketogenic diet and a new medication. His behavior began to level off and his seizures happened mostly at night. He still needed assistance during the day, special needs coming from a combination of seizures, behavior, and attention, but the district found him a one-on-one aide that could start the first day of school. Everything seemed to come together just at the right time.

His one-on-one was not specifically trained. I’m not sure she knew what the details of the job were before the first day, so we basically told her that she should keep our son safe, watch for seizures, and help keep him on task if he has a hard time focusing or demonstrating a lack of impulse control. After a week or two, we started to receive feedback from the teacher that the aide wasn’t going out to recess with him, a time where having a seizure would leave him most vulnerable. We also learned that she was making him sit by himself during lunch on those days where his stomach was having a hard time with the fat in his diet and he didn’t bring food, leaving him to sit at the end of the table away from his friends.

Instead of bringing it up to the district, we wrote a list of “expectations” with my son’s teacher and gave them to the one-one-one. She did better for a time, but it was clear that working with children was not her thing and that she was just showing up for the paycheck. There was no warmth, no compassion, and no attempt to get to know our son, but we let it go because at least she was doing something, and our son was doing so much better.

His teacher and the class aide also did what they could, but in a class of 29 children, my son could only receive so much special attention. But again, he seemed to be doing so much better, so we thought, between the teacher, aide, and the extra body that was his one-one-one, that our son was getting enough support because he was in school, making friends, and learning. Things were on cruise control, and we let a lot of things slide.

Last week, though, our son got sick. We already learned early on that epilepsy and sickness don’t play nice together. It was actually the flu that brought us to the emergency room the first time things got bad with my son’s seizures, and where we saw first-hand the increase in seizures that come along with the sneezing, coughing, and runny nose. This time, though, we had a good base of medication and diet, so we weren’t seeing a big increase in seizures, but we were seeing more attention, focus, and impulse control issues.

This happened to be the same week where my son’s one-on-one took a different job. I was told by my six-year-old that his helper’s last day was the previous Friday. No one told us (or his teacher) the the aide had left, so my son was left to find his way in a classroom during a week where he most needed the help.

The episode was our wake up call. The nurses and social workers told us before we started school that, especially with public schools that are desperate for funding, we would need to be our son’s most vocal advocates. But we got comfortable because things were going better than we could have imagined a few months ago. We let ourselves drift in to a state of dangerous complacency because of how well our son was doing and we stopped pushing for what our son needed.

I haven’t been doing it that long, so I’m still learning what it means to be the parent to a child that has special needs. It’s hard enough to watch my son struggle with his epilepsy and related side effects. It’s exhausting to think about the level of effort that will be necessary to stay vigilant and ensure he is getting even the most basic services, nevermind what he needs to succeed. But like the many other parents that struggle every day to navigate the complicated, messy, and difficult world surrounding a special needs child, I’ll be loud and fight for what my son needs. Because if I don’t, no one else will.

Giving Thanks And Giving Back

Each December, we make a special end-of-year donation to a charity. This year, we are giving thanks and donating to the organizations that helped my son and our family through our first year with epilepsy.

We are very fortunate. Even though my son’s epilepsy is complicated, we have insurance, and I have a good job working with compassionate people who allow me to balance work with taking care of my son and my family. We’ve met a lot of other families that were less fortunate, and the groups that we are donating to this year provide help to everyone. That support and the research necessary to better understand epilepsy costs money, and that is why we are donating.

If you are looking for a place to put a donation at the end of the year, each of these groups has had a direct, positive impact on my family, and I would appreciate any support you could give them.

Children’s Hospital of Philadelphia

We spent more than two months on the Neurology floor in the Children’s Hospital of Philadelphia (CHOP). Many of those days, we were at the bedside of our son praying that the seizures would stop. Thankfully, we were able to eventually go home thanks to the many, many people at CHOP that took part in my son’s care. The doctors, therapists, Child Life Services, custodial staff, EEG and phlebotomy techs, volunteers, and especially the amazing nurses on the neurology floor, collectively took care of our son and our family, and we are unspeakably grateful.

You can donate to the Children’s Hospital of Philadelphia on their Donation page.

Children’s Hospital of Philadelphia Ketogenic Kitchen

Our son has refractory epilepsy, which means that he doesn’t respond well to medicine. To help with his seizures, we were put on the ketogenic diet. At CHOP, on-boarding to the keto diet is a week-long inpatient process where the children are monitored while adjusting to the diet and where the families are trained on how to be successful with the diet, including classes in the Keto Kitchen on measuring and cooking keto meals. The Keto Team also hosts keto cooking classes, and fund a culinary intern to explore more creative, tasty meals for the keto kids.

You can donate to the CHOP Keto Kitchen on their Donation page.

Epilepsy Foundation of Eastern Pennsylvania

When my son was diagnosed with epilepsy, we spent the first few months in the hospital surrounded by an amazing support network. When we left the hospital, though, we felt very alone. We didn’t know who to talk to or where to find more information about our new world. We didn’t know what resources we would need or what was available. We didn’t know how to talk to the people around us about epilepsy. Fortunately, the resources available through the Epilepsy Foundation and the Epilepsy Foundation of Eastern Pennsylvania (EFEPA) helped. We walked in their Summer Stroll and learned more about other programs they had for the epilepsy community. They also came in to my son’s school and talked to his teachers and classmates about epilepsy. When the world seemed big, and scary, and dark, EFEPA provided a bit of light.

You can donate to the Epilepsy Foundation of Eastern Pennsylvania on their Donation page.