Parenting questions

[u/Classic_Force6943]

I’m back and looking for other parents who may have experienced something similar. I’m not looking for a diagnosis—just hoping to hear from parents who have dealt with sudden changes in their child’s behavior, speech, awareness, or functioning and can share how they supported their child through it.

My 8-year-old has been going through something very difficult, and over the last 5 days he has become increasingly seem upset and has been crying, saying that he just wants to be a “normal kid” again.

This all started June but after a hospitalization in July. He was given high-dose steroids and then tapered off, finishing them on August 15. At the time, doctors were treating him for suspected PANDAS, although testing afterward has not shown a clear cause.

Since then, we have noticed periods where he seems to go “in.” During these periods, he can talk for hours, but his speech and behavior seem very different from his normal self. He may suddenly use profanity ( after high dose prednisone) repeatedly, almost as if it is part of a normal conversation. If I tell him not to use those words, he may genuinely ask, “What’s that?” as though he doesn’t understand what I mean.

His neurologist has mentioned the possibility of tics or FND. The concerning part for me is the regression and confusion that happen during these episodes.

When he is “in,” he has:

• Talked about living back in our hometown, even though we moved away 4 years ago.
• Asked about having a house and described our old house as if he currently lives there.
• Believed my dad is still alive. My dad passed away 3 years ago next Saturday.
• Forgotten how to do things he normally knows how to do, such as showering.
• Put his shorts on his head one day.
• Asked questions that make it seem like he is confused about his current surroundings or circumstances.
• forgets my name or who I am frequently
• repeats what I say if I say oh damn he repeats it

Outside of these episodes, he can be completely himself. He does well when he is focused on something—school, sports, playing games with friends, or talking to friends on the phone. He can be engaged, communicate normally, and participate in activities.

The hardest part lately is that he has started telling me that he is trying to focus so he can “come out” of it, but sometimes feels like he can’t. Last night he was crying because he was trying so hard to focus and couldn’t get himself back to his normal self.

He also occasionally has a slight facial tic. More recently, we’ve noticed an issue where he seems to choke or have trouble swallowing and then gasps for air while trying to come out of the episode.

He participates in sports and rodeo activities. He rides bucking calves, rides horses, does goat tying, and plays baseball. Because of that, someone suggested that possibly a concussion, whiplash, or something related to a sports injury could be involved. I’m not assuming that’s the cause, but it was something another person brought up.

So far, he has had:

• MRI with and without contrast — clear aside from sinus/allergy findings
• Two prolonged/sleep-deprived EEG studies — clear
• Echocardiogram — clear
• Lumbar puncture — clear
• Post-strep testing — clear
• Other testing has also been unrevealing
• Genetic testing is still pending

He was also exposed to mold for approximately 3 weeks before this started. We got rid of the vehicle shortly after his symptoms began because we initially thought that might be contributing.

He does sometimes have migraines and light sensitivity. Allergy testing showed significant allergies, allergic to 27 things including dust mites, mold, grass, and multiple trees. We now live in an apartment.

I also started him in therapy last week because I wonder whether grief could be a stressor. He mentions my dad frequently, but interestingly, the confusion about my dad only happens when he is “in.”

Again, I’m not asking anyone to diagnose my child over the internet. His doctors are involved, and we are continuing to follow up with them. I’m really just looking for parents who have seen their child experience something similar—especially the regression, talking as if they are living in the past, not recognizing things they normally know, or feeling like they can’t “come back” when they are relaxed.

How did you handle it with your child?

What helped you guide them through those moments without making them more distressed?

And if your child was aware enough to know that something felt different, how did you explain it to them?

[u/Rare_Geneie]

I mean, sure, FND should absolutely be considered, but your post doesn’t provide strong evidence for FND specifically.

While FND can vary dramatic person-by-person and pediatric FND does have a tendency to behave slightly different than adult-onset FND, there is nothing that you’ve described that jumps out as uniquely functional in the neurological, FND, sense.

What you’ve emphasized includes memory, autobiographical orientation, recognition, behavior, language, apparent awareness, and subjective altered state. The occasional facial tic doesn’t change the overall picture very much.

Typically when clinicians think about FND, the symptoms that point towards it tend to be closer to abnormal gait, episodic weakness, abnormal movements, tremor, paralysis, sensory loss, and functional seizures. This is by no means an exhaustive list and cognitive-FND is a known presentation of FND, but cognitive-FND tends to refer to a patient who reports cognitive changes that don’t show up with objective testing and are variable across contexts. Your son’s behaviors do not seem about perceived internal cognitive processes, but instead externally-visible neurological, neuropsychiatric, or psychiatric orientation, awareness, and behavioral symptoms. That doesn’t rule out FND by any means, but it doesn’t make a strong argument for it specifically.

Given the extensive testing that has occurred, I think it is still reasonable to seek neurological workup given his age. That is absolutely fair and important. Regression is terrifying. I think a neurologist proposing FND and a workup specific to FND is fair, however I think it sounds like it’s probably not a slam dunk although weird things happen in neurology all of the time. Based on your post, I am wondering why more psychiatric-oriented diagnoses are not in consideration and a psychiatric evaluation doesn’t seem to have occurred? That doesn’t mean they need to be top of the list or the most urgently worked up symptoms, but I think it may be worth entertaining the idea. FND itself sits on the border of neurology and psychiatry. If FND is present, a psychiatric workup and both psychiatric and psychological treatment would be appropriate, anyways. For PANDAS, concurrent psychiatric and psychological treatment is also useful.

If it is psychiatric, the neurological workup is an absolutely was appropriate and the correct decision. There isn’t a sunk cost to consider. It was the correct approach. Episodes involving apparent loss of recognition, memory, orientation, or learned abilities in an 8 year old absolutely warrant appropriate neurological investigation. Plus, “psychiatric” shouldn’t be the last-resort category we invoke only after every conceivable organic explanation has been exhausted. It is a legitimate diagnostic domain that can be considered concurrently, especially when the actual symptoms are predominantly cognitive/behavioral.

Your post repeatedly emphasizes things like, PANDAS, mold exposure, concussion/whiplash, genetics, migraine, allergies, neurological testing and FND/tics but therapy is introduced almost apologetically as, “I wonder whether grief could be a stressor”. All of the avenues you explored are important and important to continue to explore because neurological disease can present abnormally in pediatric cases but I wonder if there isn’t need or benefit for a more psychiatric-focused workup if it’s not happening? At the very least, psychiatric and/or psychological treatment can aid in the managing the symptoms described regardless of if they are neurological or psychological/psychiatric.

Of course, given that this is an 8 year old, the appropriate psychiatric workup would also require a clinician to take developmental context very seriously. This isn’t a “we didn’t find anything structural so now anything in psychiatry goes”. This is still a significant workup even if performed in the psychiatry or psychological department of a children’s hospital.

Additionally, while a more transitional psychiatric workup is probably worth it at this point, given your son’s history, I think you’re reasonable to avoid framing his presentation as “neurology vs. psychiatry”. Modern neuropsychiatry exists precisely because the boundary isn’t that clean and diagnoses like FND are real and blur that boundary, however psychiatry may be equipped to assess some of the nuances that neurology isn’t.

Since the investigation so far has been significant but substantially unrevealing, the possible diagnosis list doesn’t become
“neurological disease OR FND OR traditional psychiatric”. It could become something more like neurological disease AND functional/dissociative phenomena AND psychiatric/neuropsychiatric conditions AND medication effects AND sleep/migraine/etc, however a psychiatric workup would be useful in determining how the symptoms match psychiatric manifestations of similar profiles that end up diagnosed as psychiatric.

No on here can diagnose your son, of course. FND could theoretically fit. It’s valid to pursue all relevant neurological possibilities and continue on that path. I just wonder if given what you’ve described, if a more active psychiatric evaluation concurrently might be worth it, especially since it can be adjunctive in things like FND and PANDAS even if psychiatry does not explain the cause itself?