Update - I'm a dork. Was Tic? Chorea? Absence Seizure? Hive neurologist?

[ktgrok]

Update: I'm a dork. I asked him about the hand thing and he said he's trying to teach himself to snap his fingers!!!!!!!!

This is my kid with suspected PANDAS, recently started with OCD, food restrictions and anxiety. Look at his hand starting at 17 seconds. He’s doing stuff like that a LOT, twitching his feet, and weird stuff with his mouth/tongue.  (there is now a second video further down the thread)

Edited December 17, 2018 by Ktgrok

[Selkie]

I was going to take a look because my boys were little ticcers, but I can't get the video to play. It might be my crummy internet that's causing the problem.

[ktgrok]

1 minute ago, Arctic Mama said:

Doesn’t look like either to me.  Chorea would be writhing, dance-like movements that are either subtle or strong.  And it didn’t really look like a tic beyond what my bored, physical NT kids do when they’re antsy.  I’m not an expert on brain damaged movements but getting more and more comfortable identifying them, and I don’t really see anything here that puts my mama radar on alert for atypical movement.

Do they do it all the time? He's right now doing it. In fact his hands are in constant motion almost...either doing movements like that, or picking his shirt, or twisting his hair or stretching his shirt. If they are still it's when he has them fisted I think, for the most part. 

[ktgrok]

And it definitely isn't sustained long...a few seconds and then it's like it bothers him and he changes positions or does something with his hands, or fists them. But the constant movement thing is keeping him from being able to even fall asleep at night

But I'd prefer it to be fidgeting to something else. 

Edited December 17, 2018 by Ktgrok

[ktgrok]

1 minute ago, Arctic Mama said:

What does he do if you grab the hand or ask him nicely to stop or do something else?  Does he do the movement in the absence of other movements, in boredom?  A neurological tic wouldn’t have those aspects necessarily, but a behavioral one might.  It’s not quite the same - some tics are more ‘habits’ and some are more ‘brain blip/activity’, as I understand it.  We only care about the latter so that’s what I have familiarity with.

Boredom or stimulation tics aren’t anything I’d care about unless they were disruptive to his daily activities and again.

Really though, my threshold for caring on movement is very high, like seizure or physical injury high. I won’t talk to neurology unless it looks damaging in some way.  But you could certainly call for a referral and take multiple videos to show them what you mean.  Neuro LOVES video, it’s ten times more helpful than verbal descriptions that may or may not be accurate (or where you use a word and they have a different connotation in mind than common usage).

He is seeing a neurologist already, for the sudden onset anxiety/ocd/food restrictions, to rule in or out PANDAS. Good idea to send him the video, I'll call tomorrow to ask if they have an email I can send it too. I have a few other videos as well. 

[ktgrok]

1 minute ago, Arctic Mama said:

How’s his magnesium?  I get twitchy like that when my electrolytes and minerals are off, especially post anesthesia I’ve had to pound the Cal/Mag or my hands and feet and legs get very restless.  It’s more unusual in kids but not unheard of.

electrolytes wer normal, but he is slightly iron deficient/anemic which I know can cause restless legs/etc. But he's doing this movement not just at night, but all day long. Going to keep getting video for sure. And we are now supplementing his iron and D so if it is just that hopefully it will get better sooner rather than later. 

[katilac]

It doesn't look like a tic or chorea to me, but it could definitely be OCD related. Ask him if he's doing it for a reason. My kid with garden variety OCD would make odd or fidgety motions sometimes but it wasn't random. If the sun hit only one side of her face, she might raise her arm a specific way to get 'balanced' again. The same for if she flexed her hands a certain way, walked leaning to one side a bit, different reasons for each thing. It wasn't that noticeable, I never thought twice about it until her counselor brought up OCD in a list of possibilities. I said, well, she does do this arm thing sometimes, and dd proceeded to rattle off a list of triggers and reactions, lol. I had no idea and she never thought about bringing it up.

So it's possibly OCD related, but could be random fidgeting too. If it's OCD, he'll have a ready reason.  

Edited December 17, 2018 by katilac

[unsinkable]

I looked at the video about 20 times and I think whatever is happening is starting when he is watching TV. 

what I saw:

Staring and shallow breathing in the beginning for several seconds, followed by raised eyebrows, then blinking. He seems more alert at this point, after the blinking. He then lifted his hand above his head (it was already partially raised, right?) and opened and closed his fist several times. He took several noticeable breaths then.

my guess is an absence seizure, maybe bc of photosensitiv ity. When he raises his eyebrows/blinks, it has ended. And the arm movement follows. The arm movement might be a comfort type movement, a kind of centering movement that he does after a seizure to orient himself.

 

[Heatherwith4]

The hand thing is like movements I made as a kid (and honestly still do sometimes as an adult.)  It is related to my OCD.  

[Pen]

Looked to me like he was sleepy and waking himself up. To me it looks like a purposeful hand movement, not involuntary. Can you ask him?

[Selkie]

It does not look like a tic to me, or at least not like the tics that my boys had. If anything, I would agree with previous posters that it could be OCD.

FWIW, he is right in the age range in which OCD typically rears its head and becomes noticeable to others. At least, that's how it went for both me and my kids who have OCD. I had my first big flareup when I was about seven, and my two boys were five and six.

Any history of OCD in the family?

Edited December 17, 2018 by Selkie

[ktgrok]

36 minutes ago, Pen said:

Looked to me like he was sleepy and waking himself up. To me it looks like a purposeful hand movement, not involuntary. Can you ask him?

It seems to be involuntary, but I'll ask. It could be OCD as well, hadn't thought of that. I did ask when I noticed him clenching his hands in this weird way, if it was to help keep them still and he said he didn't know 

As for seizures, we will be doing a sleep deprived EEG on December 26th, so hopefully if that is the case it will get picked up. It is definitely new. 

[ktgrok]

2 minutes ago, Selkie said:

It does not look like a tic to me, or at least not like the tics that my boys had. If anything, I would agree with previous posters that it could be OCD.

FWIW, he is right in the age range in which OCD typically rears its head and becomes noticeable to others. At least, that's how it went for both me and my kids who have OCD. I had my first big flareup when I was about seven, and my two boys were five and six.

Any history of OCD in the family?

No. Well, maybe me...I remember there was a brief period of time when I preferred to keep things balanced as far as touching things with one side of the body and then the other, but it didn't last and didn't interfere with life at all. 

This has happened just recently with him, along with anxiety, fear of all sorts of illogical things, and refusal to eat most foods he used to eat. He only eats "cold" food now, nothing hot or warm including previous favorites like hotdogs, hot chocolate, chicken nuggets, etc. Sometimes, if he's not paying attention, I can get lukewarm stuff into him, but mostly not. So some nuggets from a drive through in the car while distracted, yes. At home, no. He refused french fries at the dog show this weekend, and hot dogs, pizza, etc. All this happened around the same time as the weird fidgety movements. 

[ktgrok]

Another video from a few minutes before the other one. He does some weird stuff with his mouth around 37 seconds, just briefly (he's not talking, just making mouth movements) and then he has what looks like a startle thing with his face at 1:05 and then his hands do whatever it is they are doing.I was watching his hands so much I didn't notice the startled face until just now - I wish I knew if something exciting had happened in his game but I don't think so given that he looked away from the game afterwards, not towards it. And the only thing on the TV was Caillou, hardly worth startling over. Now I am wondering about absence seizures. He does having some weird staring into space moments that I thought were just him being spacey...like yesterday we are at a big dog show and I saw him just kind of staring into the ceiling and thought it was weird and made a mental note of it. 

Also, his big sister was evaluated by a neurologist at 18 months for what was diagnosed as a stereotypy but appeared like an exaggerated startle response. She outgrew it. 

 

Edited December 17, 2018 by Ktgrok

[Pen]

I don’t know.  Does he get a lot of active outdoor exercise time? Or does he spend a lot of his days sitting and doing things with or watching screens?

[ktgrok]

3 minutes ago, Pen said:

I don’t know.  Does he get a lot of active outdoor exercise time? Or does he spend a lot of his days sitting and doing things with or watching screens?

Depends on the day. We've had a lot of illness recently so more indoor time than usual. But even then, we get out to the dog park where he can run around, or Friday we went to a theme park and walked miles and miles, and yesterday were at the AKC national dog show and walked for about 4-5 hours total. (and got lots of doggy kisses, which this mama needed desperately!)

He definitely is a kid that needs a lot of outdoor time. But even walking around the theme park or the dog park I noticed him doing the hand motions, etc. 

[Lecka]

My younger son did some things like this.  

Okay, he has autism.  

But, I had comments at the time that he looked like he could be having an absence seizure.  

Within a couple of months (and I had SO much going on) it was clear my son would respond instantly for certain things even when he looked like he might be having a seizure.  So — I didn’t follow up on it — and it was always a 99% chance autism, 1% chance absence seizures, situation with him. 

But anyway — I think it would be good to check into absence seizures.  Especially since you are seeing no particular signs of autism.  My son had MANY signs of autism.  

 

[ktgrok]

1 minute ago, Lecka said:

My younger son did some things like this.  

Okay, he has autism.  

But, I had comments at the time that he looked like he could be having an absence seizure.  

Within a couple of months (and I had SO much going on) it was clear my son would respond instantly for certain things even when he looked like he might be having a seizure.  So — I didn’t follow up on it — and it was always a 99% chance autism, 1% chance absence seizures, situation with him. 

But anyway — I think it would be good to check into absence seizures.  Especially since you are seeing no particular signs of autism.  My son had MANY signs of autism.  

 

Really, it is like my son became autistic in the last little bit. Except, he never was like this before, and you generally don't become autistic at 6 yrs old. And he doesn't have any of the social deficits at all. Just hyper, twitchy, awkward, melting down over weird things, food restrictions, etc etc. 

[Pen]

Is walking enough at age 6? I think of running, tag, ball games, jumping rope, climbing trees and or jungle gyms for many hours per day. Not enough motor exercise in day could add to not sleeping well. 

So can anxiety. I recall deliberately trying to stay awake at around that age because of living in a scary neighborhood and there being stories of serial killers on the news. 

A child I knew started into OCD around that age with manifestations including weird movements with his mouth because he thought he was going to gag on his tongue. However he could explain it if asked. 

[Pen]

1 minute ago, Ktgrok said:

Really, it is like my son became autistic in the last little bit. Except, he never was like this before, and you generally don't become autistic at 6 yrs old. And he doesn't have any of the social deficits at all. Just hyper, twitchy, awkward, melting down over weird things, food restrictions, etc etc. 

 

By definition of autism, doesn’t it require symptoms present at a younger age?

[Lecka]

1 minute ago, Ktgrok said:

Really, it is like my son became autistic in the last little bit. Except, he never was like this before, and you generally don't become autistic at 6 yrs old. And he doesn't have any of the social deficits at all. Just hyper, twitchy, awkward, melting down over weird things, food restrictions, etc etc. 

 

A lot of things look that way, though, I think.  

[Lecka]

1 minute ago, Pen said:

 

By definition of autism, doesn’t it require symptoms present at a younger age?

 

Kind-of but not really.  There is both late-onset (I think) and incredibly subtle signs that no one would be likely to notice.  I just read something about this I will link it.  

[ktgrok]

2 minutes ago, Pen said:

Is walking enough at age 6? I think of running, tag, ball games, jumping rope, climbing trees and or jungle gyms for many hours per day. Not enough motor exercise in day could add to not sleeping well. 

So can anxiety. I recall deliberately trying to stay awake at around that age because of living in a scary neighborhood and there being stories of serial killers on the news. 

A child I knew started into OCD around that age with manifestations including weird movements with his mouth because he thought he was going to gag on his tongue. However he could explain it if asked. 

Well, I was walking. He darted and ran ahead, spun around, ran back, etc etc. Plus we have a rope swing in the front yard he climbs every time we walk outside, even if just going to get in the car. Today he went to sunday school where he played, then played on the playground after church, then had pageant rehearsal, then a late lunch, then attempted to help clean up the house but couldn't concentrate at all, then was on screens when I did those videos. So not a huge outdoors day but not just sitting around either. At the theme park he ran and ran and danced and such, not just walked. 

Just now, Pen said:

 

By definition of autism, doesn’t it require symptoms present at a younger age?

Yes, which is why it is so weird!

[J-rap]

I couldn't get the first one to play.  The second one?  I didn't see anything unusual at all.  I mean, I fidget like that a lot myself.  Some of my kids do too.  Even the mouth movement.  I wouldn't think anything of it.

[ktgrok]

2 minutes ago, Lecka said:

 

A lot of things look that way, though, I think.  

Exactly. I don't think he's autistic, I think something is going on that we haven't figured out yet. 

[Lecka]

https://www.spectrumnews.org/news/slow-onset-may-explain-late-autism-diagnosis-children/

This is just interesting to me, I read it recently.  

[Selkie]

43 minutes ago, Ktgrok said:

No. Well, maybe me...I remember there was a brief period of time when I preferred to keep things balanced as far as touching things with one side of the body and then the other, but it didn't last and didn't interfere with life at all. 

This has happened just recently with him, along with anxiety, fear of all sorts of illogical things, and refusal to eat most foods he used to eat. He only eats "cold" food now, nothing hot or warm including previous favorites like hotdogs, hot chocolate, chicken nuggets, etc. Sometimes, if he's not paying attention, I can get lukewarm stuff into him, but mostly not. So some nuggets from a drive through in the car while distracted, yes. At home, no. He refused french fries at the dog show this weekend, and hot dogs, pizza, etc. All this happened around the same time as the weird fidgety movements. 

Has he said why he doesn't want to eat warm or hot food? If it's OCD, he may be trying to avoid it because he thinks it is somehow unsafe.

I remember when my ds was six, he went through an OCD phase where he was trying not to touch anything made of wood - because the firemen had been at school for fire prevention week and one of them said that wood can catch fire. My poor kid was trying to jump from one piece of furniture to another so he didn't have to touch the wood floor because wood wasn't safe. Luckily, that fear passed pretty quickly!

[Lecka]

5 minutes ago, Ktgrok said:

Exactly. I don't think he's autistic, I think something is going on that we haven't figured out yet. 

 

I have this sense where — I have talked to people where their kids had things that “looked like” autism, and it’s just — it’s a shorthand but it doesn’t really mean anything as far as having autism.  Especially for younger kids!

Edit:  But it’s a pretty good shorthand sometimes!

Edited December 17, 2018 by Lecka

[ktgrok]

1 minute ago, Selkie said:

Has he said why he doesn't want to eat warm or hot food? If it's OCD, he may be trying to avoid it because he thinks it is somehow unsafe.

I remember when my ds was six, he went through an OCD phase where he was trying not to touch anything made of wood - because the firemen had been at school for fire prevention week and one of them said that wood can catch fire. My poor kid was trying to jump from one piece of furniture to another so he didn't have to touch the wood floor because wood wasn't safe. Luckily, that fear passed pretty quickly!

I did ask, and he said he didn't know - maybe because "the united states is mostly hot so I need cool foods to cool down". We do live in Florida, but it's not hot here right now. 

[ktgrok]

Regarding the fireman, that's why I aborted the idea of doing a fire safety unit when the chimney sweep came recently. I realized (beforehand, thankfully) that something like that was likely to happen!

[ktgrok]

Oh and B12 and folate levels were good.

[Pen]

Did you ask him about his hand movement or if something about the game or on tv surprised him?

[Catwoman]

1 hour ago, Ktgrok said:

Exactly. I don't think he's autistic, I think something is going on that we haven't figured out yet. 

 

Katie, I know people were responding to your posts pretty quickly, and it seems like you may have missed this post from unsinkable. I’m only posting it again because I know she has had so many years of personal experience with her own child’s seizures, and it appears that she took a lot of time trying to analyze the videos you posted, and she has some concerns that you might want to discuss with your son’s neurologist. 

I’ll pray that this turns out to be nothing serious for your son.

3 hours ago, unsinkable said:

I looked at the video about 20 times and I think whatever is happening is starting when he is watching TV. 

what I saw:

Staring and shallow breathing in the beginning for several seconds, followed by raised eyebrows, then blinking. He seems more alert at this point, after the blinking. He then lifted his hand above his head (it was already partially raised, right?) and opened and closed his fist several times. He took several noticeable breaths then.

my guess is an absence seizure, maybe bc of photosensitiv ity. When he raises his eyebrows/blinks, it has ended. And the arm movement follows. The arm movement might be a comfort type movement, a kind of centering movement that he does after a seizure to orient himself.

 

 

[trulycrabby]

I agree with unsinkable and catwoman. Absence seizure. 

Edited December 17, 2018 by trulycrabby

[unsinkable]

16 minutes ago, Catwoman said:

 

Katie, I know people were responding to your posts pretty quickly, and it seems like you may have missed this post from unsinkable. I’m only posting it again because I know she has had so many years of personal experience with her own child’s seizures, and it appears that she took a lot of time trying to analyze the videos you posted, and she has some concerns that you might want to discuss with your son’s neurologist. 

I’ll pray that this turns out to be nothing serious for your son.

 

Thanks, Cat. 🐱

I hope I'm wrong; i hate when anyone gets an epilepsy diagnosis. He is at the peak age of when kids are diagnosed with this type of seizure (absence) and fortunately, something like 70% of kids outgrow them by their teens. 

But let's pray it is not this.

[Catwoman]

2 minutes ago, unsinkable said:

Thanks, Cat. 🐱

I hope I'm wrong; i hate when anyone gets an epilepsy diagnosis. He is at the peak age of when kids are diagnosed with this type of seizure (absence) and fortunately, something like 70% of kids outgrow them by their teens. 

But let's pray it is not this.

 

Yes, definitely. Pray that it’s something minor and harmless, but check to rule out for sure that it’s not something serious that needs to be treated.

[Innisfree]

8 hours ago, Lecka said:

https://www.spectrumnews.org/news/slow-onset-may-explain-late-autism-diagnosis-children/

This is just interesting to me, I read it recently.  

Just wanted to say I liked this because it's interesting to me, not because I think it pertains to Ktgrok's ds.

I hope you can get this figured out, Katie. I know the whole situation is concerning.

[ktgrok]

Thanks. I did see the seizure suggestion, and now I am definitely considering that in the possibilities. He has an EEG scheduled for December 26th, do you think I need to try to get on a cancelation list for sooner than that? That was the first available. 

I honestly hadn't considered seizures until last night watching the video, and after unsinkable suggested it, so I haven't tried to get his attention. I've been watching his hands/feet not his face, so I'll watch today for that. I do know he has spacey moments, and it is VERY common for us to need to say his name more than once to get his attention, but he also likely has ADHD like the rest of us so it could just be that. I'll be watching him today. 

That "startle" expression really concerns me though....if it was something on his tablet that surprised/startled him why did he look up to the TV not at the tablet when it happened, you know? 

I didn't ask him, because I honestly didn't notice it until looking  at the video last night after he was in bed. 

[ktgrok]

And, I'm an idiot. 

I asked him about the hand thing and he said he's trying to learn to snap his fingers!!!!!!! 

[Pen]

Even though the hand movement looked to me like it was 

11 hours ago, Pen said:

Looked to me like he was sleepy and waking himself up. To me it looks like a purposeful hand movement, not involuntary. Can you ask him?

 

And asking him seems to have confirmed that, I have some concern about the before it part where he looked sleepy (or even a microsleep) to me , or like perhaps an absence seizure to others.

I would suggest you ask him if he has ever tried to keep himself from falling asleep or if he has any fears at night.  You may need to ask this after he has gone to bed if he isn’t falling asleep because he may not remember it during the daytime.  

Generally he looks a lot healthier in the picture than I had imagined since you had written he had lost a lot of weight quickly and wasn’t eating well. His weight, at least in appearance long distance to me, does not look abnormal (though nutritional status could be a problem from what you described).  

But to me he looks very tired. Over tired.     

And sleep loss itself can cause a lot of problems. 

Have you read Matthew Walker’s book about sleep?

 I personally would probably go to zero screens for the younger kids (and keep him away from screens that the adults or older kids may need to use) because they can interfere with healthy sleep patterns (as well as perhaps trigger seizures if that is going on), and work on sleep and nutrition while waiting for the appointments and also afterwards. 

[ktgrok]

Thanks all. I saw him doing something similar with his hands a few minutes ago and asked if he was trying to snap and he said no. So..who knows. EEG should give more info at least. I'll keep getting video. And maybe learn how to edit the videos, to take out the baby whining in the background and just get the relevant clips 🙂

He's just SO fidgety.....but the OCD "worries" are not as bad, just one that I know of yesterday. But fidgety and trouble concentrating. 

[Lecka]

I think this still sounds like a good update.  

Okay, I don't know much about this, and never was able to find youtube video or anything ----- but again I didn't look into it much.

There is something called "grimacing" apparently.  Does anyone know exactly what it is lolololol?  Because I really don't.  

But apparently my son grimaced or also grimaced (I'm not really sure) and grimacing is really something where it can "look like" autism, but really be absence seizures.

I never really understood what this was exactly, though...... but I would be told my son grimaced.  

 

[Lecka]

Okay -- as for not responding to his name...... here is how it was here.....

My son might not respond to his name, but he would respond to, oh, say, the Dora song.  Or something like that.  He could look completely spacey, and then if for some reason there was candy all of a sudden, the spaced out look would disappear in an instant.  

That is kind-of what I mean about how he *would* respond.  

I never followed up on this properly myself, though, to be honest.  

Edit:  I also think a lot of times kids don't respond to their names!  It's not like, not responding to his name a few times is necessarily meaning anything at all!  Still you can see what you notice.  

Edited December 17, 2018 by Lecka

[ktgrok]

And, to add to the story, just got the call that he tested positive for Celiac antibodies. 

[ktgrok]

And I caught him doing the mouth thing and he is sounding out words in his head, silently, lol!!

 

[ktgrok]

20 minutes ago, Arctic Mama said:

I’m glad you asked!  Again, I didn’t see any red flags but I’m not there, and what if he WASN’T in his head and sounding stuff out?  This sort of thing is complex in s younger child and you’re a good mama for investigating and making sure you’re not missing any symptoms.  Him being silly with snapping or sounding out is wonderful news, and less to worry about, but it was definitely worth asking 😚

And both are very new and sudden behaviors, which was what was concerning me. BUT, he just decided to learn to snap, and he is an emergent reader so trying to sound things out is new to him, lol. There may be a bit of OCD present as well, as he said when he finishes a game he likes to snap, and I'm not sure how compelled he feels to do that, but that's better than a seizure!

Edited December 18, 2018 by Ktgrok

[unsinkable]

On 12/16/2018 at 10:01 PM, Ktgrok said:

It seems to be involuntary, but I'll ask. It could be OCD as well, hadn't thought of that. I did ask when I noticed him clenching his hands in this weird way, if it was to help keep them still and he said he didn't know 

As for seizures, we will be doing a sleep deprived EEG on December 26th, so hopefully if that is the case it will get picked up. It is definitely new. 

How did this go? Did the tech have him hyperventilate? That can provoke absence seizures in some people who have them.

[ktgrok]

17 minutes ago, unsinkable said:

How did this go? Did the tech have him hyperventilate? That can provoke absence seizures in some people who have them.

Thank you for asking! We actually had to reschedule because we got sick. And they have a sign in the office that you MUST reschedule if fever/sickness/etc due to the immune compromised patients they see. We are doing it next week...I think the 3rd?