Working with insurance and health providers for faster LGS care
Managing the physical limitations, daily assistance, and emergency care needs of a child with Lennox-Gastaut syndrome (LGS) can feel like a full-time job. Add the stress of navigating insurance for rare disease in the U.S., and your daily load can feel impossible.
If you care for a child or young adult with LGS, you likely know the cycle well: prescribed care, prior authorizations, denials, and appeals.
Tracy Dixon-Salazar, PhD, founder and CEO of the LGS Foundation, shared practical guidance on securing insurance for LGS care for families caught in that cycle. Her organization now serves a community of 14,000 people with LGS and their families. She is also the mother of Savannah, who died in 2025 at age 31 from sudden unexpected death in epilepsy.
Why insurance for LGS care is so hard
The biggest hurdle, Dixon-Salazar says, involves getting insurers to approve the specialty medications, devices, and therapies your child urgently needs, and approving them in time.
Because LGS is rare, insurers often apply rules built for more common epilepsies, causing unnecessary delays, denials, and suffering. Working with an LGS specialist team remains critical for this reason. These medical and psychosocial experts know what your child needs and how to work with insurers to secure coverage, including through appeals.
Top 3 insurance challenges to expect
- Prior authorization denials and yearly renewals, even for medications your child has taken for years
- Step therapy rules and formulary exclusions, especially for rescue medications and newer treatments
- Quantity caps and coverage limits on specialized treatments, including medications, devices, therapies, surgeries, and specialty diets
More than seizures
“An easier question would be what is NOT challenging and stressful for parents to fight for,” Dixon-Salazar says. As a mother and nonprofit CEO, she has seen how LGS-related needs fall through the cracks of insurance coverage formulas.
LGS is a severe developmental and epileptic encephalopathy, but insurers typically process it under the same diagnostic codes as more common epilepsies. That approach creates a major barrier because LGS care involves far greater complexity.
“It’s so much more than seizures,” Dixon-Salazar says. Some children take five, six, even seven seizure medications. They may also experience gastrointestinal symptoms, respiratory or sleep difficulties, limited mobility requiring a wheelchair, and a special medical diet or feeding tube.
Some children and young adults experience seizures every week or even every day, despite medications and other treatments like brain surgeries and neuromodulation devices such as vagus nerve stimulation. And the risk of fall-related injury is an omnipresent worry.
A rescue medication to stop a seizure may be needed more than once a week. Yet some plans assume standard antiseizure medications control these seizures, covering rescue medication only three times a month. Even when your child regularly needs it eight times a month, the burden of proof falls on you and your specialist.
Read more about insurance barriers here.
Understanding the prior authorization process for LGS
Getting needed medications approved takes constant diligence, because rules around prior authorization for epilepsy rarely account for the complexity of LGS. Families face prior authorization delays and denials, step therapy requirements, formulary exclusions, and quantity limits.
“Prior authorization is a huge barrier to good care for our loved ones,” Dixon-Salazar says. “A person with LGS can be on the same medication for 10 years but still needs a prior authorization every January to renew the medication. And that prior authorization might even get denied despite the previous approval history.”
Beyond medications, you often need coverage for nursing, equipment, feeding support, respite care, home modifications, and more. “Most are either capped, denied, delayed, inconsistently covered, or treated as non-medical,” Dixon-Salazar says. In the meantime, a family is left to wait and suffer the consequences.
Tips for documenting medical necessity for insurers
Insurers, doctors, and families often define “medical necessity” differently, leaving the term open to interpretation.
“Most families have no idea how a payor determines medical necessity,” Dixon-Salazar says. “In theory, it’s supposed to be based on the proven effectiveness of the treatment or diagnostic tool, medical need, how well the treatment/tool works vs. other options that might be just as good.”
This is where an experienced LGS care team comes in. Beyond prescribing what a patient needs, they can appeal denials, push back on generics that may not work as well, and make the case for treatments and services an insurer might not recognize as necessary.
The foundation also encourages you to gather evidence at home that supplements your doctor’s letter of medical necessity with objective data. The table below shows how your at-home tracking strengthens your case for medical necessity:
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| LGS care need | What to track at home | How it helps your insurance appeal |
|---|---|---|
| Rescue medications | Monthly dose count, dates, and time to seizure resolution | Overrides arbitrary plan caps (e.g., proving eight doses/month are needed when a plan limits to three) |
| Seizure types and safety | Frequency of tonic/atonic (drop) seizures, falls, and injuries | Justifies coverage for safety gear (helmets), specialized mobility equipment, and home modifications |
| Medication trials | Start/stop dates, dosage levels, side effects, and reasons for stopping | Bypasses step therapy and formulary exclusion rules requiring trials of cheaper or generic alternatives. |
| Non-seizure care | GI issues, feeding tube reliance, mobility limits, and sleep patterns | Proves care extends beyond basic epilepsy to justify nursing, specialized diets, and medical supplies |
| Emergency utilization | ER visits, hospitalizations, and urgent clinic contacts per month | Demonstrates that approving preventive specialty care reduces high-cost emergency interventions |
It may also help to document behavioral changes, such as hyperactivity, aggression, or autism-like traits and developmental delays, including physical, speech, or reading delays.
Keep detailed notes about the type of seizures that are occurring and how often. According to the Epilepsy Foundation, the types of seizures associated with LGS include:
- tonic seizures: when muscles suddenly stiffen up, often while the child is sleeping
- atonic seizures: when muscles suddenly lose all strength, causing the child to fall down
- atypical absence seizures: when the child stares blankly and does not respond
This detail matters to insurers. For example, a record of frequent drop attacks and falls supports coverage for a protective helmet or other safety equipment.
How to effectively appeal a denial for specialized care
When a request gets denied, doctors carry much of the burden of appealing. “They have to fill out forms, get on calls with the payors to explain why they need this treatment, try to explain that their years of expertise in treating LGS patients (and the fact that they have actually seen and examined the person) make them a better candidate for deciding how to treat them than the insurance company,” Dixon-Salazar says.
She continues: “In most cases, after one to three appeals by the doctor, we can get things covered. But this goes on and on and on. In the meantime, the family feels powerless to do anything other than keep making calls to move the process along. And this can result in delays in treatment. It also results in a lot of added stress to families that are dealing with life and death every single day.”
Accessing specialized treatments follows the exact same frustrating pattern of appeals, doctor involvement, forms, calls, and stress. “If you can devote your life to this process, you have a good shot at getting what you need for your loved one,” Dixon-Salazar says. “Many families just give up.”
Knowing how the process works can help you push it forward:
- Read the denial notice closely. It should state the specific reason for denial, such as missing documentation, an excluded drug, or a finding that the treatment lacks medical necessity. Share it with your doctor’s office right away so they can address that specific issue.
- Ask about a peer-to-peer review. One of the fastest routes to appealing LGS medication denials is a peer-to-peer review. Your child’s doctor must request this opportunity to speak directly with the insurer’s medical director. Ask your doctor’s office if they requested one, and follow up regularly.
- Know the difference between internal and external appeals. An internal appeal asks the insurer to reconsider its own decision. If they uphold the denial, you can usually request an external review by an independent party. If your child’s health is at immediate risk, request an expedited appeal at either stage.
- Keep a call log. Note the date, the name of the person you spoke with, and the reference number for every call, and save copies of every letter and form.
“Dealing with insurance is a lifelong battle, not a short-term thing for all of us living with LGS,” Dixon-Salazar says.
But families don’t have to fight it alone. In addition to personalized education and support, the LGS Foundation offers families help through its Elevate Patient Assistance Program and a Financial Resource Toolkit.
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.
