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Getting specialist care in Minnesota

Two things determine whether an appointment is useful: what you bring to it, and whether you are seeing the right person at all. This page covers both, plus our own data on how far that care is from where people live.

We do not explain what an EEG measures or what a scan shows. Clinicians do that, and the links at the end are better than anything we could write.

Who decides

Whether any of this applies to you is a clinical judgment. Nothing here is medical advice. Ask your neurologist.

What to bring

Almost everyone underestimates this. The description of what happened matters more than any test, because the person having a seizure cannot see it and the neurologist was not there.

Write down, for each episode:

  • The date, the time it started, and the time it stopped
  • What the person was doing beforehand, and how much they had slept
  • What the movements looked like, and where they started
  • Whether they responded to their name or a touch
  • How long until they were back to normal, and whether they remember it
  • Whether a dose had been missed

A phone video of an episode, taken when it is safe to do so, is worth more than a page of description. Clinicians ask for these often. The free observation log in our school packet is one page and designed for exactly this.

What to ask

  1. What do you think is happening, and what would change your mind?
  2. What will this test tell us, and what will it not tell us?
  3. How should we prepare, and what does the day look like?
  4. When do we get results, and who calls whom?
  5. What should we do if another episode happens before then?
  6. Who do I contact between appointments?

If the first medicines are not working

About a third of people with epilepsy keep having seizures on medication. There is a name for that, and there is a referral that should happen. Many families wait years before anyone says so.

Epilepsy is called drug resistant when two suitable antiseizure medicines, properly chosen and properly taken, have failed to stop the seizures. That definition comes from the International League Against Epilepsy and it is widely used.

It matters because it is the point at which guidance says to look beyond another prescription. If you have tried two and you are still having seizures, that is the moment to ask about a referral, not after the fifth.

A question that costs nothing to ask: "Would you consider me drug resistant, and should I be evaluated at an epilepsy center?"

The options that exist beyond medicine

We list these so you know the words. Each is a serious decision with real risks and benefits, and the links go to clinicians who explain them properly.

  • Surgery, including procedures that remove or disconnect the area seizures start in
  • Laser ablation, a less invasive alternative in some cases
  • Nerve and brain stimulation devices, known as VNS, RNS and DBS
  • Dietary therapy, including the ketogenic diet, used most often with children
  • Clinical trials of newer treatments

Read about them here: the Epilepsy Foundation on treatments and the National Association of Epilepsy Centers.

Where that care is, and how far

Comprehensive epilepsy centers are accredited by the National Association of Epilepsy Centers. Level 4 is the highest category. Minnesota has four: Mayo Clinic, the University of Minnesota with MINCEP, Abbott Northwestern, and the Minnesota Epilepsy Group with Children's Minnesota.

Our own data on how far people live from that care:

  • 101 school districts, about 70,400 students, are more than 60 straight-line miles from the nearest child neurologist
  • 11 districts, 4,613 students, are more than 100 miles away
  • The farthest districts are in Kittson, Marshall and Big Stone counties, where the nearest accredited center is nearly 300 miles away
  • 80 of those 101 distant districts also post no seizure plan, so the families with the least access to specialists are also in the schools least likely to be ready

Look up any district: distance to care.

Distance is a real barrier and it is also not the end of the conversation. Ask whether the center offers a telehealth first visit, whether they run outreach clinics closer to you, and whether Medical Assistance will cover travel. Those answers vary by system and they are worth asking for by name.

If you are getting nowhere

  • Ask for the referral in writing, and ask what the wait is
  • Ask your primary care clinic to make it if the neurology office will not
  • If cost is the barrier rather than distance, start with paying for epilepsy care
  • The Epilepsy Foundation of Minnesota has staff who help people navigate exactly this: https://www.epilepsyfoundationmn.org/

Where to read about the tests and treatments

These are written and reviewed by clinicians.

What this page is

EDAN is a student-led data and advocacy project. The distances and district figures here are ours, from public federal data, and the methods are published. The clinical material belongs to the sources we link. Corrections to edanmnorg@gmail.com.