Lost parent looking for advice/what should we be asking neuro

[Lostparent]

Old neuro sent us another message saying the EEG results are completely normal without offering further explanation for the this is an abnormal test.

I feel so “ relieved”

[funnylegs4]

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Old neuro sent us another message saying the EEG results are completely normal without offering further explanation for the this is an abnormal test.

I feel so “ relieved”

Old Neuro is so annoying. So Sorry old Neuro refuses to explain anything of value. Glad EEG was normal though.

[Lostparent]

Not seizure related( that I can tell ) but any thoughts on this video?

I’ve shown his speech, occupational, and physical therapist. Also the vision therapist with county services seen it as well as his pediatrician and will show his ENT Friday and new neuro in May.

Everyone has different opinions so I’m lost

https://share.icloud.com/photos/0pRO...dGjQsgkD6L3Yzg

[funnylegs4]

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Not seizure related( that I can tell ) but any thoughts on this video?

I’ve shown his speech, occupational, and physical therapist. Also the vision therapist with county services seen it as well as his pediatrician and will show his ENT Friday and new neuro in May.

Everyone has different opinions so I’m lost

https://share.icloud.com/photos/0pRO...dGjQsgkD6L3Yzg

Sorry it took me so long to respond to this. Looks to me like there's something in his field of vision. It looks like what my friend who has a stroke and glaucoma does right before he starts to feel very dizzy because his vision blurs and distorts and then he becomes more physically disoriented. Your son might see floaters or blurring and might be like "Oh that's usual". If he's looking up at a light that might explain the visual distortion he might be seeing. When I look up at certain types of lights I can feel my brain reacting differently and some of my friends who have seizures have sensitivity to light even when the light does not cause a seizure. That's my best guess. Hope this helps.

[Lostparent]

@funnylegs4

Thank you for the response the 3 opinions we have from various doctors, therapists, etc

Are

Difficulty swallowing ( although this is rare while eating)

Light gazing( although you can get his attention)

A mix of both swallow and light gazing which makes no sense.

And it’s nothing to worry about.

So I will certainly bring up what you thought at our next visit.

[funnylegs4]

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@funnylegs4

Thank you for the response the 3 opinions we have from various doctors, therapists, etc

Are

Difficulty swallowing ( although this is rare while eating)

Light gazing( although you can get his attention)

A mix of both swallow and light gazing which makes no sense.

And it’s nothing to worry about.

So I will certainly bring up what you thought at our next visit.

You're very welcome!! Um swallowing issues would show up during eating so I don't know why they would say its rare. Does he stutter, stammer, slur words or drool? Those can be signs of physical swallowing issues called dysphagia. There are good methods for treating dysphagia but if it is dysphagia you need to be sure as some people with dysphagia die of chocking. I once knew a woman who saved someone with dysphagia from choking to death. Light gazing seems possible and seems closer to what's on your video in terms of his movements. He seems aware when he looks up though like my friend before he gets dizzy. It seems voluntary. They may mean he's just playing with his food when they say "nothing to worry about".

[Lostparent]

I hope this finds everyone well and Covid free.

Our neurologist believes his head tilting issue may be seizures and wants to order another MRI( 3rd one).

I do have a question seeing it won’t be until late August when we can see her again.

Is it possible to walk while having a seizure and continue walking during it? It seems like a contradiction but I would like some opinions here as well.

Regards

[funnylegs4]

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I hope this finds everyone well and Covid free.

Our neurologist believes his head tilting issue may be seizures and wants to order another MRI( 3rd one).

I do have a question seeing it won’t be until late August when we can see her again.

Is it possible to walk while having a seizure and continue walking during it? It seems like a contradiction but I would like some opinions here as well.

Regards

So glad to get an update from you. How are you doing in social distancing?? I'm perfectly healthy. When a woman I worked with epilepsy, was first diagnosed, she showed me youtube videos of people having a type of seizure where they could walk, move their upper body and make sound. So I guess it is possible to walk during a seizure. I'm not sure what type of epilepsy it is called or how rare it is. The head titling can certainly be seizures so that's why I would get scared when my friend with the stroke had a head tilt but his was harmless. Keep us updated?

[Lostparent]

Not having any issues with social distancing. Work I primarily stay in the stockroom which means I don’t see a lot of people.

Just very frustrating having to do telemedicine for therapy and appointments

[funnylegs4]

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Not having any issues with social distancing. Work I primarily stay in the stockroom which means I don’t see a lot of people.

Just very frustrating having to do telemedicine for therapy and appointments

Thanks for the social distancing update. So glad you are all safe! Yes I also think it's unfair for so called "elective" procedures to have been cancelled because a ton of people need their medical in person.