Rachel Ablondi recently wrote an article expressing her journey and thoughts on her son’s life with Lennox-Gastaut syndrome (LGS) in an effort to get a message across to doctors. While she has learned so much over Andrew’s 21 years with LGS from neurologists and other healthcare professionals, she also knows that they should be learning from her as well.
Lennox-Gastaut syndrome is a rare and severe form of epilepsy that accounts for five percent of childhood epilepsy cases. Symptoms tend to appear between the ages of two and six, with repetitive, frequent seizures being the major effect. Patients may experience absence, atonic, or tonic seizures, in addition to behavioral issues, learning and developmental delays, and injuries from falls.
Medical professionals are not always sure of the cause of LGS, but it is identifiable in some cases. Possible causes include premature birth, lack of oxygen at birth, low birth weight, severe brain infections, severe brain injury during birth or pregnancy, and issues with brain development during pregnancy. In terms of treatment, doctors will utilize anti-seizure medications, surgery to place a nerve stimulator, special diets, and corpus callosotomy surgery in severe cases.
A Mother’s Message to Doctors
A strong relationship with one’s care team is extremely important, and this is something that Rachel has learned during the 21 years of her son’s life. She knows that she has learned so much from Andrew’s doctors, but she is also aware that they should be learning from her and other patients and their caregivers.
Firstly, she wants them to know the goal that always stands at the forefront. She wants her son’s seizures controlled. She wants him to get better, but she knows that she cannot do that alone. For his entire life, she has been learning as she’s gone along, picking up information about LGS and conducting her own research. She has also become an expert in “Andrew Care.” Now, she wants to share some of her insights with her son’s doctors.
Coming to Appointments
Scheduling an appointment with a doctor can be difficult, and this becomes even harder when trying to meet with a specialist. Rachel wants healthcare professionals to understand this. If she and her son have waited more than half of a year for an appointment, it is the least a doctor can do to provide them with his or her undivided attention. She knows that doctors are on a tight schedule, but they should know how long she and her son have waited to get there.
Additionally, she wants them to understand how an appointment affects her and her family. It’s much more than thirty minutes of her time. She lost sleep over the various moving parts that led to this appointment, such as making arrangements for her other children, driving out of her way, and worrying about her son the entire time. The experience is stressful before they even walk into the doctor’s office, and medical professionals should be aware of this.
Being a Caregiver
Another thing that Rachel wants to get across is her knowledge. She has done the research, been to the conferences, and experienced life with her son for more than two decades. Doctors should accept that she knows what she’s talking about.
This plays into her next point, which is that medications do have side effects. Andrew has been taking anti-epileptic medications for long enough that they know about the additional effects. Sometimes her son’s symptoms are not a rare, complicated effect of his condition, sometimes it’s the simple answer: the medication.
At the end of the day, doctors should consider Rachel a part of the care team, because she is. She knows what she’s talking about, she is an expert in Andrew’s care, and she just wants what’s best for her son. Ask her questions, include her in conversations, and make sure she’s truly part of the team. In her own words,
“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 Her Where She Is
Rachel’s experience has been scary, confusing, and so many other things. It’s been a whirlwind since Andrew was born. Trying to find him the correct diagnosis and treatments was a priority, and doctors helped her to the best of their ability for the entire journey.
Now that Andrew is an adult and still experiences seizures, this priority has changed. Rachel wants to ensure that her son is happy and living his life to its fullest potential, and her doctors should meet her at this goal.
In the end, she chooses her son’s doctors for a reason, not at random. She researched credentials and experience, as she wants only the best for her son. She wants your expertise and knowledge, so share it with her and any other caregiver you encounter.