What to Expect

Memantine (Namenda)

Overview

Memantine (Namenda) Protocol — What to Expect (Parent Guide)
This page explains what families should expect if they pursue memantine (Namenda) as part of the FHW Autism Treatment Protocol. This is a structured, closely monitored medication trial. It is not a cure for autism, and it does not replace school supports, therapy, OT/speech, or skills programs. The goal is to assess memantine’s capacity to help a specific symptom pattern in a subset of patients, using clear tracking and frequent check-ins.

Before you can start

You will need an evaluation at FHW to confirm the diagnosis and review the full clinical picture (including co-occurring conditions that may change the plan).

You will complete baseline questionnaires so we can measure real change over time (not guess).

We will review risks, side effects, and safety planning, and confirm that your family can commit to the required follow-up schedule.

What starting the trial looks like

If the protocol is a reasonable fit, memantine is started low and increased slowly.

The exact dosing plan is individualized based on age/weight, response, and side effects.

You will be asked to track specific target concerns at home (for example: social engagement, agitated episodes, recovery time, irritability patterns, sleep changes, and others).

Appointment Expectations

Early visits are frequent because dose changes require close monitoring.

Once a working dose is reached, visits usually move to about monthly for ongoing tracking (through the first year).

Missed appointments should be avoided in this protocol. The expected appointment frequency will be explicitly outlined prior to starting the protocol. If you find that you cannot reliably attend the appointment schedule, you should not start until your schedule allows.

What improvements should you look for (if it helps)

Memantine’s expected benefit is usually specific, not “everything gets better.” If it works, families often notice:

More social engagement – most common
Less intense overload (noise/crowds/transitions)
Faster “cool down” after stress
Fewer or smaller meltdowns/shutdowns

If benefit occurs, it is often seen over the first several weeks as patterns shift gradually, not overnight.

Additional Information

What side effects should you watch for

Most side effects, if they happen, are mild and resolve (for example: stomach upset, headache, sleep changes, dizziness). More important (and less common) concerns include:

New or clearly worse irritability/agitation
New or clearly worse anxiety/overstimulation
Major sleep disruption that does not settle
Unsteady walking, confusion, or unusual “spacing out” If a concerning change happens, the plan is not to “push through.” We may pause a dose increase, adjust the plan, or stop the trial if needed.

What happens with other medications during the protocol
FHW will want to take over management of the full medication plan while your child is in this protocol. This is necessary so we can track changes in real time and accurately tell what is helping versus what is causing side effects. If another prescriber changes medications at the same time, it becomes unsafe and unreliable to interpret results.

What happens if you want to stop (or leave the protocol)
You can leave the protocol at any time. If memantine is stopped, we typically use a taper rather than an abrupt stop, based on the situation. You may also return to your previous prescriber whenever you choose.

What happens after the first year
At the one-year point, we re-check whether continuing still makes sense based on the risk vs benefit for your child. We also review any new research that has been published and integrate it into the decision.