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What I Want Doctors to Know About My Son With a Rare Form of Epilepsy

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My 21-year-old son Andrew is diagnosed with epilepsy. His epilepsy diagnosis is a rare one. Lennox Gastaut syndrome (LGS) affects only about 50,000 children and adults in the United States. One of the most difficult aspects of LGS is uncontrolled seizures. This is definitely the most difficult part for Andrew and our family. I’ve learned a great deal over the years from Andrew’s neurologists, and now as a seasoned mom to a son who requires constant care, I would like to share my perspective in return. I want to maintain the relationship with Andrew’s neurologist, and also continue our partnership in Andrew’s care.

First and foremost, please understand there is nothing I want more than for Andrew’s seizures to be controlled. That one thing is by far my greatest wish for him, and I cannot make that happen. That weighs on me every single day.

I started like everyone else as a new mom, and was immediately thrust into a world involving constant medical care, difficult decisions, medicines, medical equipment, therapies, dietary issues, seizures and so much more. In those early days, I had to do my own research. I found the need to connect with other families facing the same circumstances. I don’t know of many other diagnoses where parents and their children live this kind of life. Day in and day out we live in constant fear of losing our children, and helplessly watch daily, sometimes hourly seizures, and medication ups and downs. This life can bring you down if you let it. As Andrew’s mom for over 21 years, I can for certain say, I am an expert in “Andrew Care.” Please don’t question my decisions without experiencing personally our day-to-day lives.

To get to the medical appointment to see you, I’ve lost some sleep the night before as I have worried about every move I will make to get my son out of our door, and then to your office. I have other children at home I have to arrange care for as well. I drive over an hour to get to your office, and have to circle your building until a parking spot opens that will accommodate my larger wheelchair-accessible van. We wait our turn in the furthest corner of the waiting room so Andrew won’t pick up germs from someone else. My son likes to make noise in quiet settings, and I frantically try to keep him occupied so he doesn’t make too much noise in the quiet waiting room. Oh, and I pray he doesn’t seize while he’s waiting. When my son seizes his arms and legs shake violently, and he’ll gasp for air. I don’t want others to see him this way. Andrew deserves his dignity, and not to be stared at. Doctor visits are stressful even before they begin.

I waited six months or more for this appointment; please give me your undivided time to hear my questions and concerns. I know you’ve seen many patients today. I’ve been to enough appointments over the years to know you’re on a tight schedule.

I have researched LGS online. I have attended conferences in person. I’ve made it a priority to educate myself as much as I can, and I don’t see how that’s a bad thing. It’s OK that I’m an educated caregiver.

Medications do have side effects, especially anti-epileptic medications. We’ve learned this all too well. Sometimes when there’s an issue, it’s the simplest thing, not the most complicated. These medications aren’t benign.

Consider me part of the team. My son had a procedure done recently at the hospital. A few days before the procedure, the nurse called me to go over pre-operative instructions. She asked me about Andrew’s seizures, and admitted she’d never heard of LGS. She made sure that my husband and I could be by our son’s side in the hospital. Ask for my input, ask me questions. Knowing that you are interested and having your respect as someone who knows her son and his diagnosis validates the job I am doing.

Meet me where I am. When my son was 2 days old, he seized. He was whisked away from me and brought behind closed curtains. I saw the urgency in your care, we needed answers, and we entrusted his new, fragile life to your expert medical care. I was terrified. I knew nothing. You cared for my son, ran tests, shared results, directed me on what steps to take next. I was a new mom. I needed direction. You gave that to me, and even more, you gave me a shoulder to cry on.

When my son was 1 and seizures that were under control returned as clusters of seizures, Andrew was given the diagnosis of infantile spasms. Heartbroken and scared, you gave me options for treatment of this new diagnosis. Over the next few years, stopping the variety of seizures was now the main focus and you recommended medications, diets and alternative therapies. Andrew tried it all. Over 15 medications and alternative therapies to be exact. Once again, you directed me with all the knowledge you had available to you, and you were there to answer my questions as we introduced new treatments.

As Andrew grew older, his seizures didn’t stop, but my knowledge and experience strengthened. This is when you agreed with me that LGS was Andrew’s diagnosis. You ran more tests after those medications didn’t control his seizures. You checked whether Andrew was a surgical candidate and whether the VNS would decrease or lessen his seizures. I went down any path I could just to stop the seizures and allow Andrew some freedom from the effects all those seizures have on him. I knew you were still offering your best medical tools for this difficult diagnosis.

Now, as an adult, my son still seizes. Unfortunately, very little has helped him. Seizures and medication side effects have taken their toll. I have to change my views now. I have no choice. There’s life to be lived without as many medication trials. Now, what’s important? I need to ask: Is Andrew happy? Is he comfortable? Does he eat well, sleep well, is he healthy overall? Does Andrew lead a full life? Does he stay out of the hospital? Yes. Your care for now is to maintain his quality of life.

Finally, please know that I chose you to be my son’s doctor. I asked around. I researched your credentials. I am desperately seeking your input, your knowledge, your expertise on how to help Andrew. That will never change.

At this point I want you to hear my words, my experiences. It’s been overwhelming. My hope is that you’ll continue to treat Andrew’s future care with your knowledge, medical expertise, compassion and understanding. Who knows, maybe my views will also help in your care for Andrew, and in the care of others as well.

Getty image by Jaren Wicklund.

Originally published: July 8, 2021
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