I’m the parent of a 16 year old recently diagnosed with FND. They haven’t been to school for more than an hour or two since February of last year. They’re autistic and have noise sensitivity, which seems to be a major trigger along with anxiety. They started out vomiting every day for months and then moved on to syncopes and functional seizures and black outs in the last three months. That’s when we finally got a diagnosis. We’d been doing endoscopies looking for a physical cause to his vomiting and seeing a neurologist looking into possible childhood migraines and when the function seizures started she gave us our diagnosis. I’m so overwhelmed—I don’t even know where to start. Social services has an open case on us because my child hardly ever goes to school even though I’ve been in touch with the school every day trying to figure out how to get my child an education. I just cry and cry because I don’t know how to help or what to do. I feel like I can’t leave them or let them go out alone because I never know when they’re going to end up out cold on the ground. I feel like we live in a black hole. Someone please tell me how I can get started getting them treatment. The psychiatrist recommended outpatient treatment but I’m having trouble finding something that works with our insurance and it’s so expensive, and I think the environment would be problematic for my child because they’re so sensitive to noise. They can’t even eat in most restaurants without a lot of discomfort if not outright pain. Does anyone have any experience with FND with teens? What helped?
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I’m so sorry your child is going through this, it must be so scary for all of you. I totally relate to the sound sensitivity aspect (I’m a 45yr old female autistic and my sound sensitivity has got a lot more extreme since developing FND). I’m afraid I don’t have any answers for you, but the one thing I might suggest is to look at educationotherwise.org/. We used to home educate our kids, and there are so many families (especially with neurodivergent children) who have to take this route due to the pressure and stress of schools on their children. I would say that to remove as much of that stress as possible (for you and your child) could only help…
I truly hope things ease for you all soon, and that you find some support and understanding from those around you.
No experience w FND in teens, as my husband was diagnosed in his 50’s, but a few suggestions for your consideration:
Tackle each symptom separately, with the goal of finding a few that can be managed or reduced to make your teen more comfortable. For example, we found meds that help to manage his headaches and his anxiety + depression. For his movement issues, we have a walker for inside the home that has a seat, so he can quickly sit if he’s dizzy, and an electric wheelchair for outside the house. And hearing aids help somewhat to reduce the constant tinitis.
My husband had increased symptoms (pain + vomitimg) immediately after eating. We finally switched to small liquid meals (protein shakes) for two of his three meals daily that seem to reduce these post-meal symptoms.
Have you tried noise cancelling headphones to manage sound sensitivity?
hello! I went through this with my 10 year old. The good news is you now know it’s FND. The bad news is yes it’s beyond scary and you can still feel helpless.
It does go away! Does not need to be treated with medication. Your child needs weekly or bi weekly therapy. Specifically cognitive behavioral therapy (CBD). Which is a common practice. OT will help as well. If there is any physical ailments, my child couldn’t use his legs, then also add on PT. If if your child was diagnosed with FND, insurance should cover these things?
Anyway, I feel for you and your child so scary and so frustrating. It can and will get better! Don’t stop fighting, don’t stop researching and understand and be a fierce advocate for your child!
Hi, we are awaiting talking therapy in Spring for my 16 year old, referral and letter done late by Neurologist, so take each day as it comes.My son has missed so much school due to a whole range of symptoms, he was diagnosed with CRPS (Chronic Regional Pain Syndrome) and FND (June/Nov 22), what a rollercoaster
Think some link to school but unknown, as after he has got over whatever symptom he had been experiencing (headaches, flu, falls etc), he is usually better in the school holidays.
When he does get into school its "a normal day". One such visit to A&E after he knocked himself out, my birthday in fact, I first had to go through safeguarding steps (as 2nd visit in a week) and then told by a younger Dr, I was over protective (as I mentioned I was hovering by the stairs (just to ensure he made it down safely to get to school). Couldn't win.
Was your son getting support (at school, special needs) for his Autism before the FND diagnosis?
Maybe some noise desensitivity, I have heard others mention special headphones may help.
I don't have experience with teens with FN(C)D but have known some young people with autism, migraine and other conditions who have benefited from using the No Isolation AV1 robot for remote schooling. If your/your teenager's health care providers haven't told you about this option, but are, instead, focussing on you as an 'anxious parent' (or whatever terms they use, these days) then shame on them. This gizmo is widely used in adult ed too (eg for doctors who can't attend courses in person due to family commitments such as childcare) and - although it's not perfect - it's been a breakthrough for people with sensory overload issues, whatever the cause.
Thank you all for your comments. I’ve been thinking about the idea of being treated as an anxious parent. Lady4 was told she was being overprotective. Online I saw one video about FND by a psycho neurologist who said FND is caused by childhood trauma, especially by insecure attachments to cold mothers. Which are we? Anxious and overprotective or cold and unresponsive? I thought we were past blaming “refrigerator moms.” I WANT to walk behind my child every time he goes up and down the stairs and was told I’m putting in insignificant safeguards for him. At the same time I’m being told to step back more, don’t hover or “medicalize” his condition. It really seems like an impossible line to walk.
My child had accommodations for autism in school, including noise canceling headphones, but they don’t help much. They reduce background hums, like traffic sounds or airplane noise, but most are designed to let in voices, which are triggering for him.
For now, we’ve given up on in-person school. We’re looking into virtual options or homeschooling. It’s a tremendous relief to not have to dread every school day. While he still has occasional symptoms, he’s already showing a lot of improvement.
He’s been doing cognitive behavioral therapy for nearly a decade, since elementary school, and I can’t tell that it’s ever done a thing for him. He says he finds it helpful, but his symptoms have never improved and recently I’ve been seeing more and more that autistic people aren’t always helped by CBT because of the rigidity of their outlook. That certainly aligns with what I’ve seen. Every suggestion anyone makes, my child responds with all the ways that would be completely impossible. Trying to get him to change his mind about anything he feels strongly about is like politely asking a brick wall to step out of the way.
Right now I’m looking into a program by the Kennedy Krieger Institute for kids and teens—an FND Clinic! It has a neurologist, psychiatrist, cognitive behavioral therapists, occupational therapists, and physical therapists all working together to design a recovery plan for your child and working with your child every week. It’s in Baltimore—an hour’s drive for us but worth it. I haven’t been able to find anything like this anywhere else in our area. I’m hopeful my child will be accepted as a patient. It’s not listed on their webpage, but for anyone in the MidAtlantic region it might be worth looking into by contacting the psychiatry department of Kennedy Krieger. For adults, try the psychology department of Johns Hopkins. I spoke to them first and they’re the ones who referred us to Kennedy Krieger. They’re really nice and helpful!
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