5 things I do to make my child’s care team move faster in treating LGS
Fact-checked by As someone who’d never seen a seizure in person prior to the onset of my son’s Lennox-Gastaut syndrome (LGS), I cannot adequately describe the dread that hit me like a freight train upon receiving his diagnosis. Is my son’s life over before it even started? Will his development regress? Will he ever be able to get married and have a family of his own? And perhaps most importantly, how do we treat this starting right now?
I spent our first year post-diagnosis biting nails during the long wait times between appointments, tests, and our pediatric epilepsy specialists’ communications. I quickly realized that while our doctors were deeply dedicated, the typical clinic’s workflow and limitations simply weren’t suitable for the speed we desperately needed. To accelerate my child’s treatment, I had to transition from an overwhelmed parent to the active project manager of his care.
I’ve learned a lot about advocating for LGS care with urgency. Here is the playbook I recommend to make your medical team move faster.
Collect and track as much data as possible
While there are consensus guidelines for managing LGS, the condition is notoriously drug-resistant, meaning there is no single one-size-fits-all treatment that guarantees universal success. There are also constantly new treatments being developed.
To reduce trial and error and move faster in selecting the right treatment, it is extremely important to have all of the currently known treatments presented by the doctors from the start.
Ask them about their experiences treating the condition in other patients, especially those whose LGS presents similarly to your child’s. While no two cases of LGS are alike, it’s helped ease my anxiety to get an understanding of all available options, and that confidence means faster decisions.
Additionally, to help specialists guide treatment recommendations, know that they tend to operate in data rather than emotion-driven summaries. By tracking not just the number of seizures, but explicit metrics — such as precise duration, recovery times, sleep patterns, and behavioral changes — you provide the clinic with that data. Bringing an organized log to appointments helps your care team make faster choices and adjustments because you’ve handed them a clear clinical picture.
Seek second opinions from other LGS specialists
While LGS treatment research and protocols are constantly evolving each day, you may run into some resistance to trying the treatment of your choice. As a parent to a small child, my first instinct was to try available treatments that had less severe potential side effects. When one of our initial doctors opposed us trying one of those treatments and insisted a corpus callosotomy (a brain surgery) should be the first option, I was terrified.
I respect that doctors are experts, but it didn’t make sense to me to go straight to a serious, risky surgery as a first option. Everything I have read about the condition myself suggested starting with the least invasive options.
To avoid any delays in treatments, we promptly sought second and third opinions from other providers. While respecting the providers’ expertise, trust your gut instinct if you disagree with a suggested treatment path.
The logistical trick to obtaining those fast second and third opinions is knowing how to communicate outside standard clinical boundaries. Standard patient portals (like MyChart) or front-desk receptionists are built to filter routine medical traffic, meaning your urgent request can sit unanswered for days. To bypass these gatekeepers, search for direct emails or phone lines as a direct connection to a clinic’s specialized clinical coordinator or lead epilepsy nurse.
Know when to change a strategy
Treating LGS can feel like a science fair experiment. We may have hypotheses that one will work, but it’s hard to accurately predict outcomes. So, refuse to be surprised by failure. Whenever the effectiveness of a treatment seems to wane, collect data and do not hesitate to bring up your concerns to the doctor ASAP.
One of my biggest regrets with my son occurred early when his development started to decline and the seizures slowly started to increase. It felt like watching a frog slowly boiling in water. We were still learning to navigate this experience and were mostly hoping that he would rebound soon.
After a couple of months without improvement, we sought a second opinion. His medications were completely overhauled and his condition improved greatly. Unfortunately, I’ll never know if my hesitation to wait things out permanently affected anything, but the lesson was learned: Act quickly if anything starts to decline.
Since then, we’ve found ourselves changing treatment routines every year or so. We’ve gone through dozens of medication doses and combinations, as well as the initially suggested brain surgery once our son was older and stronger. Each time we pushed for an update to our plan, he improved. Every single time. Most providers have been very responsive and accommodating. It is important to note that, in my experience, you will be the final decider of change and the judge of whether a treatment is going well or not.
To drive that responsive momentum from your team and avoid the agonizing wait-and-see plateau that leads to regression, you must walk into your appointments with action-oriented questions like:
- “What is our precise timeline for evaluating this new medication combination before we declare it a failure and pivot?”
- “If my child’s development plateaus or seizure intensity shifts before our next scheduled visit, what is our backup strategy so we don’t waste weeks waiting on a new appointment slot?”
Know when to request a formal case review
If your child’s care team becomes passive, dismisses your observations and preferences, or is generally slow to respond while your child’s milestones regress, you are not powerless. You have the right to request a formal case review or contact a hospital patient ombudsman to audit your care pathway.
Furthermore, do not hesitate to step outside your local network to seek an external evaluation at a Level 4 Comprehensive Epilepsy Center. These specialized hubs have multidisciplinary boards explicitly structured to evaluate refractory, high-needs cases like LGS with a level of speed and aggression standard clinics simply do not match.
Don’t ever give up
The gauntlet of dozens of medication options, surgery options, and the hundreds of treatment combination options can make the situation feel hopeless at first glance. But you never stop fighting. Never stop advocating for better LGS care. Keep upgrading meds and doctors to get the best possible outcome. Improvement is at hand for the parent who pushes forward.
Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
