Navigating a Functional Neurological Disorder (FND) Diagnosis in Children: Understanding, Coping, and Finding Support

If your child was diagnosed with a Functional Neurological Disorder (FND), I understand you may be scared and confused. It can be terrifying to witness your child’s body seemingly out of control. We will discuss what is happening and some strategies you can use at home to help you through this challenging time.

Throughout history, there have been many different names for what is now called FND. You may recall learning that women used to be called “hysterical” when they displayed emotional or somatic symptoms. It was thought that the dysregulation came from the uterus, and thus, many women had their uteruses removed (hysterectomies)! More recently, these symptoms were called Conversion Disorder.

In medicine, a symptom or cluster of symptoms is labeled as functional if there is no underlying anatomical, pathological, or physiological reason for them. Despite the lack of medical evidence underlying the disorder, it is felt for real in the body and is not the patient faking the symptoms.

A Functional Neurological Disorder is when the body displays what looks like a neurological disorder despite no medical origin or explanation for the symptoms. For example, a patient might have what looks like a seizure, but there is no epileptic source in the brain based on EEG evaluation. Other common FND symptoms include temporary paralysis of one or more body parts, drop attacks (passing out and dropping to the floor), and sudden, temporary blindness. The symptoms feel so real–and they are–they just don’t have a purely medical basis.

While chronic pain is not an FND, these two syndromes often co-occur or appear at different times in a person’s life. Those with a history of medical ailments are more susceptible to developing an FND. In addition, many people with FNDs also have co-morbid anxiety, OCD, and depression.

Most people with an FND are female, and the incidence has skyrocketed since the Covid pandemic. This rapid increase is no doubt linked to an overwhelming increase in anxiety, coupled with the fact that FND symptoms are particularly susceptible to “contagion” between peers. When you add TikTok videos showing people with FND symptoms, it is easy for people to subconsciously develop the same symptoms under the “right” circumstances.

When people have emotions that they are not expressing, trauma that they have not processed, stressors that they do not know how to handle, or ongoing negative situations that they do not know how to escape, the body can express what is going on through these FND symptoms.

Although these symptoms can be quite terrifying to the patient and their family members, the good news is that they are treated quite successfully by psychotherapists who work with FNDs.

*Note: This blog is not intended as a substitute for treatment.*

FND is a diagnosis that requires therapy for the child and the family. This blog is intended to help parents find the right practitioners to help. You can use this information to start working on helping your child now, but you need to find a therapist who has experience working with FNDs or somatic (bodily) symptoms to get the full benefit.

First, you must rule out medical causes for your child’s symptoms. Once that is done and practitioners feel that the symptoms are psychogenic, you will need a therapist to help you. In the meantime, here are some strategies to get started:

Look for emotional and physical triggers.
Take note of when the FND symptoms happen. Triggers can be external (e.g., hearing parents arguing, bright lights), internal (e.g., feeling anxious), or physical (e.g., feeling fatigued or in pain). Keep a log of when they happen and look for trends. Knowing the triggers can assist in avoiding situations that can cause the symptoms or confronting those situations head-on before the symptoms appear.

Jasmine was a 13-year-old girl whose parents tended to overwhelm her by repeating the exact requests over a short period. Jasmine did not feel, based on past experiences, that her parents would stop doing this if she said she was getting overwhelmed and requested a break. So, she would have a non-epileptic seizure, which would allow her to escape the situation. Jasmine did not do this consciously—it came out as part of therapy that this was one of the functions of her symptoms.

In addition, it was her perception that her parents did not validate her feelings when she had negative emotions (anger, sadness, frustration) and would instead just try to fix the issue, tell her to calm down, or just say it would be OK. Her parents tried their best to help her, but she did not feel understood. During these times, she would get so distressed by her feelings, followed by not being validated, that she would also have non-epileptic seizures then, as well. Once we changed the parents’ behavior of repeating requests and engaged in family therapy to help her parents learn how to validate her feelings, her episodes reduced dramatically.

Don’t feed the symptoms.
Put some thought into the function of the symptoms. Do they help your child avoid conflict or intense feelings? Avoid expectations? Bring attention to your child?

Suppose your child receives extra attention during these FND episodes, especially if the rest of the family is often working or busy. In that case, this attention could be providing your child with secondary gain for their symptoms. While you want your child to be safe, avoid giving too much attention during these episodes so as not to reinforce them.

If you are stressed when these episodes happen (which is totally understandable, as they can be very frightening), practice taking deep breaths and relaxing your muscles. The more upset and panicky you are while they happen, the more attention the episodes (and your child during them) will receive.

During a non-epileptic seizure, do not crowd around, hold, or talk continuously to your child. Move your child to a safe place, if not in one already. Tell your child, “You’re having an episode. You’re safe. I will be nearby and return when the episode is finished.”

I have witnessed families giving their children a great deal of attention and loving care during FND episodes—attention and care that the children are seeking. Focus on giving that attention and comfort when your child is NOT displaying these symptoms.

Many parents feel they cannot generally leave their children alone in case of an episode. This is another way that the child receives attention. Look for safe ways to let your child at least be in a room alone because otherwise, the child is not only rewarded for the symptoms but also focused too much on them, which can lead to an increase in symptom frequency. So, treat your child as normally as possible and give as much attention as possible during symptom-free times.

This strategy becomes even trickier with drop attacks, as parents are understandably concerned that during one of these, their child will get hurt (particularly head trauma from falling). This situation must be delicately worked out with the therapist and doctor. Still, in most cases, children typically do not get hurt – perhaps they subconsciously know their surroundings.

Daisy was a teenager with multiple FND symptoms, one of which was drop attacks that tended to occur when she went into the bathroom to shower. This is obviously a dangerous place to pass out, but somehow, she never got hurt. Of course, you must balance the child’s safety with not giving the symptoms too much attention—so again, the goal is to attend to the child as much as possible outside of these symptoms. Unfortunately, the default is typically to do the opposite, especially when you are trying to get work done during the periods when your child is okay.

The same principle applies to other FND symptoms, such as temporary blindness, deafness, or paralysis. Aside from obviously meeting basic needs, do not pamper or go overboard; do everything for your child. You do not want to allow for any secondary gain of the symptom and do not want to attend to it too closely. Treat it as something complex but not alarming or permanent.

When the FND episode is over, it is a good time to comfort your child about how scary it felt.
If this was the case for your child—not if it only was scary for you! And discuss the trigger. If you can identify the trigger, you and your child can problem-solve how they could get support next time before the symptoms occur or express the feelings that led to the episode with you or someone else.

Create fun experiences to connect with your child.
You probably have noticed that you spend much time with your child discussing symptoms, medical appointments, treatments, what school work they are missing, and so on. Carve out 15 minutes daily to have fun with your child without discussing anything medical. Play a game together, watch a TV show you enjoy, garden, decorate a cake, etc. This should happen every day, regardless of symptoms or behavior. We want your child to have as much attention as possible while not having FND symptoms and to be treated as commonly as possible so as not to overidentify as being a patient.

If your child has Psychogenic Non-Epileptic Seizures (PNES), do not call them “seizures,” and do not call 911.
I like to call them “episodes.” We do not want to call them “seizures” because that invokes an underlying medical cause instead of a psychogenic cause. Epileptic seizures are terrifying and very serious. Calling them seizures will likely cause others to treat your child very carefully and bestow more attention on the symptoms. This will keep your child in the sick role, which we want to reverse.

Jenna is a 12-year-old with non-epileptic seizures. She has older siblings and parents who are all very busy. She has a history of many medical ailments, as well as pain. When I first met her and her family, they referred to her episodes as seizures. Family members would come running to help her. She was held, caressed, talked to like a baby, and became the family's sole focus. She was never left alone. She said she could not hear during an episode, so her well-meaning siblings would trace letters on her hands to communicate during them.

It was clear that Jenna could hear during the episodes (not all people can) but that the exchange was providing her with much-needed attention. Among other changes, her episodes reduced when her mom started taking her to do special activities alone, and her family stopped coddling her during episodes.

If your child has an FND diagnosis, do not call 911 for these episodes, as medical treatment will only exacerbate the symptoms. Make a plan with the school to not call 911. You will need a letter from your physician explaining that these are not epileptic seizures and should be ignored, other than keeping the child physically safe. The other students will also need to be informed. However, many kids with an FND do not have these symptoms in public.

Help your child to express feelings.
Many kids with an FND have difficulty identifying and expressing emotions, predominantly negative feelings like sadness and anger. Those feelings then come out in other ways through the body.

Sometimes, the link is even symbolic. For example, one of my clients with an FND was mad at her mother. She did not fully recognize the feeling and did not express it verbally. Instead, while riding in the backseat of the family car, her leg would begin to spasm, kicking (without her control) the passenger seat in front of her that her mom was sitting in.

Encourage your child to express her feelings and validate them, even if they are angry feelings. You can give your child a journal to write or draw thoughts and feelings in. You can model expressing feelings to your child and invite your child to share her feelings using open-ended questions. Praise your child for being open about those feelings, and be sure not to judge the feelings.

Sometimes, children have an FND episode because they feel they cannot express feelings openly without repercussions, so it is essential to notice how you react to your child’s expression of emotions. I typically use a metaphor to explain to kids how negative feelings being trapped inside the body lead to physical symptoms:

Imagine your body is a jar, and each negative feeling goes into it like goop. If enough goop builds up in the jar, eventually, the lid will explode. This explosion is like pain or FND symptoms. But if we poke even a small hole in the jar each day, it releases enough pressure so that the lid does not blow off.

Aside from just expressing feelings, you can help your child problem-solve how to handle situations that are causing negative emotions or stress to try to avoid the issue causing the FND symptoms.

Model calming activities.
Listen to a guided meditation with your child, or take deep breaths together when your child is stressed. Doing it together helps the child learn the skills and conveys that it is worth calming the body and mind. Walking is also an excellent way to talk while getting fresh air and exercising.

Having a child with an FND is very frightening. The symptoms are scary, and your child’s body seems so out of control. I know it feels like there is nothing to do to help your child whose body is betraying her. Typical milestones like going to sleepovers or learning to drive get postponed.

But I promise that there is hope. There are effective treatments. It will take time, and it will require the participation of the entire family at some level. But in the end, your child will gain insight into her feelings and learn much more effective ways to handle stress.

The calmer and more positive you can stay, your whole family will be better off. Be sure to get support for yourself, too, as this is a very emotional, complex challenge. Ultimately, I hope your child and your entire family will become closer and more communicative.