How the guideline talks about surgery

One of the most important parts of this guideline is that the strongest recommendations it makes are actually about surgery. There are many “conditional” recommendations (meaning the evidence is limited and families’ preferences matter a lot), but surgery for certain situations is different.

1. Hemispherectomy/hemispherotomy

The guideline makes a strong recommendation for hemispherectomy/hemispherotomy in infants and children with drug‑resistant epilepsy that affects one whole side of the brain (called “holohemispheric”), when it’s caused by specific problems like:

• Hemimegalencephaly

• Rasmussen’s encephalitis

• Sturge‑Weber syndrome

• Perinatal stroke

• Hemispheric cortical dysplasia.

For these children, the panel recommends hemispherotomy or hemispherectomy rather than continuing to add more medications.

Why such a strong recommendation?

There are lots of reasons the guideline gives a strong recommendation for surgery.

1. Drug‑resistant epilepsy in these conditions is considered life‑threatening, with a high risk of serious developmental harm and even death (including SUDEP) if left uncontrolled. A lifetime of drug-resistant seizures is dangerous. And seizures in infancy disrupt how the brain develops, which can prevent a child from reaching important milestones like walking, talking, and learning.

2. Surgery offers much higher chances of seizure freedom compared with trying different medications.

3. Studies reviewed in the guideline found that hemispherectomy/hemispherotomy can lead to seizure freedom in a majority of appropriately selected children, often in the range of 70-90 percent in otherwise very refractory epilepsy, though the evidence is still limited and comes from non‑randomized studies.

The guideline recognizes that this is not a easy decision for parents and is very honest that hemispheric surgery carries moderate risk, including immediate surgical risks and longer‑term risks like hydrocephalus, and the possibility that seizures could return over time. But when the alternative is relentless seizures damaging a developing brain, the balance tips toward surgery for many families.

2. Other resections and disconnections

For infants with drug‑resistant focal or lesional epilepsy (where the seizures come from one area or several areas, not the whole hemisphere), the guideline also makes a strong recommendation for:

• Intralobar, multilobar, or focal resections

• Posterior disconnections (like TPO – temporoparietaloccipital disconnection)

Again, these are recommended instead of continuing with medicines alone, because:

• Drug-resistant epilepsy in this age group is considered life‑threatening if left untreated.

• Surgery significantly increases the chance of seizure freedom or major seizure reduction, with acceptable complication rates at experienced centers.

The evidence for these surgeries is lower quality (mostly small studies), but taken together, they show that many infants who undergo resection or disconnection can achieve good seizure control and, in some cases, improved developmental scores.

3. Supratentorial Tumor‑related epilepsy

If a baby has seizures because of a brain tumor in the upper part of the brain, the guideline leans toward removing the tumor instead of not operating, but this advice is cautious because there are not many studies yet and the type and behavior of the tumor make a big difference in the decision.

4. Vagus Nerve Stimulation (VNS)

For vagus nerve stimulation (VNS), there is not enough published data in this specific age group for the guideline to make a recommendation one way or another. (The other day a parent shared that their child had VNS implanted at eight months old, so just because the guideline says there isn’t enough evidence, doesn’t mean that the surgery isn’t possible or won’t help.)

What “early surgery” really means for families

The guideline makes clear that the landscape of epilepsy surgery in children under 3 years of age has changed over the last three decades. This is because we now know more about two important truths:

• Uncontrolled seizures in infancy can seriously harm cognitive and motor development.

• When done in experienced centers, epilepsy surgery in infants can be safe and feasible and may improve both seizure control and developmental outcomes.

That means:

• Not waiting “until they are older” if seizures are clearly uncontrolled and a structural lesion is visible on MRI.

• Not endlessly cycling through medication after medication when the chance of them working is low.

• Bringing in a whole team (epileptologists, neurosurgeons, anesthesiologists, neuroradiologists, neuropsychologists, and specialized nurses) to carefully evaluate the risks and benefits.

The guideline even notes that families place a huge emotional weight on surgical decisions and specifically calls out the need for compassionate communication and counseling throughout the process. That acknowledgment alone would have meant a lot to me 19 years ago.

Where medication and diet fit into the picture

Even though this post focuses on surgery, it helps to understand how surgery fits into the bigger treatment plan. You can read the guideline yourself to see what it says about medication and diet. However, the key takeaway is that the guideline says during surgical evaluation, a third medication can be trialed and/or ketogenic diet. It does not say to try a third medication first, wait until it doesn’t work, or try the ketogenic diet and wait to see if that doesn’t work. That would of course delay surgical evaluation – for our children, where time is of the essence, this is important.

Turning dense guidelines into questions you can ask

Clinical guidelines are written in technical language for doctors, but they are about your child’s life. Here are some concrete questions the AES guideline empowers you to ask:

1. “Does my child meet the criteria for drug‑resistant epilepsy?”
   If your baby has tried two appropriate anti‑seizure medicines and is still having seizures, the answer may be yes, and that changes what should happen next.

2. “Is there a structural cause on MRI that could make my baby a candidate for surgery?”
   The guideline emphasizes early MRI and genetic testing to understand the cause of seizures. If there is a structural problem confined to one hemisphere or a focal region, surgery may be on the table sooner than you think.

3. “Can we be referred now to a pediatric epilepsy center with surgical and dietary expertise?”
   The document is explicit that children with persistent seizures should be referred to specialized centers, not managed indefinitely in general neurology without surgical input.

4. “If surgery is an option, what type would you consider and what outcomes do you typically see?”
   You can ask directly about:

   • Hemispherectomy/hemispherotomy for hemispheric problems like hemimegalencephaly

   • Focal or multilobar resections or posterior disconnections for more localized lesions.

What I hope parents take away

If you are reading this because someone has mentioned epilepsy surgery for your infant, I want you to know:

• You deserve clear, honest information about all options (medication, diet, and surgery) and how they fit together.

• You deserve early referral to an experienced pediatric epilepsy center if seizures are not under control.

• You deserve a team that sees you as a partner in decision‑making, not a bystander.

The AES infantile epilepsy guideline is not perfect, but it is a huge step forward. It tells doctors that surgery is not a last‑ditch option for “later,” but a potentially life‑saving, development‑protecting treatment that should be considered early.

With my son, Henry, the day after his hemispherotomy.