Can the doctor be wrong?

[englishp]

I have been trying to keep a sort of diary on my six year old's seizures since they began in January. I have noticed recurring trends (or maybe just coincidences) prior to seizures.

1. First being changes in sleep habits. Something as simple as getting into bed an hour and a half late seems to have an effect. Could that little affect him?

2. Next he seems to have played his hand held video game (Nintendo 3DS...he plays with the 3D turned off...says it makes his stomach hurt) for extended periods. I had initially banned him from it after reading the seizure disclaimer. His neurologist assured me that it played no part as his EEG showed no photosensitivity. Can he be wrong? Could it be that the EEG just didn't show that?

3. Lastly he has a runny nose...sometimes just hours before a seizure. It's an odd thing...runs clear...with the consistancy of water (sorry for the description) and it seems to go away immediately afterward. Doctor thinks there is no connection. Anybody ever heard of such?

I am really trying to track the seizures and look for clues...but I don't want to be unrealistic.

 

[Nakamova]

I think some doctors can be too quick to dismiss things, or too arrogant to admit that they don't know everything. I think the proof is in the pudding -- i.e. the actual results/effects you are observing.

1. If you've noticed that your son's sleep habits affect his seizures, then something is going on. It might have to do with how quickly your son falls asleep, or what he does in the time before he goes to bed, or how much light he is exposed to, or how many times he wakes up at night, or how early he wakes up in the morning. But it seems reasonable to assume a connection. I think an hour-and-a-half is a significant chunk of time, maybe more so for a 6-year-old than for an adult. And sleep plays a huge role in seizures, so I'm not sure why the neurologist doesn't think there might be a connection.

2. EEGs are not definitive tests. Some seizure activity is too transient, or originates too deep in the brain to show up on an EEG. So it might be something that was missed by the EEG. OR, maybe it would have shown up if your son was hooked up to a 3D-device during his EEG. OR, your son could be sensitive to 3D visuals but they don't directly cause his seizures, they just cause him discomfort (they same way people with migraines can be photosensitive).

3. A runny nose is common after a temporal lobe seizure but not after seizures in other locations. This isn't exactly what you've observed, but it does show that there can be a connection between the two symptoms. Since many different things can cause a runny nose, it's a bit tricky to know what is cause and effect. Does your son have a fever when he has the runny nose, or is it just a sinus drip? Has he been tested for allergies? Is he always in the same location when his nose starts to run? It could be systemic or environmental factors, or a combo that are playing a role. Or it could be a coincidence. Without more information, it's hard to draw any conclusions.

 

[Rae1889]

1. First being changes in sleep habits. Something as simple as getting into bed an hour and a half late seems to have an effect. Could that little affect him?

Yes, Sleep can affect seizures. ALOT. It could be that going to bed late isnt letting him get enough rest, or he is having a fitful sleep. It could also have to do with WHY he is staying up later. Is he playing his video game when he should be in bed? Late night getting home from a friends house? Eating late? etc

2. Next he seems to have played his hand held video game (Nintendo 3DS...he plays with the 3D turned off...says it makes his stomach hurt) for extended periods. I had initially banned him from it after reading the seizure disclaimer. His neurologist assured me that it played no part as his EEG showed no photosensitivity. Can he be wrong? Could it be that the EEG just didn't show that?

Photosensitivity does not just mean flashing lights. It could be watching scrolling motions, looking at grids, pixels, patterns, colours etc. Photosensitive means visually triggered. Thats it, so yes it is possible the DS can be causing these, regardless of it not showing on EEG. If he didnt have a seizure during EEG it wouldnt be caught, or it starts too deep in the brain to be caught. Or it was a lucky chance that the lights didnt bother him, when they normally would.

3. Lastly he has a runny nose...sometimes just hours before a seizure. It's an odd thing...runs clear...with the consistancy of water (sorry for the description) and it seems to go away immediately afterward. Doctor thinks there is no connection. Anybody ever heard of such?

Seizures affect all areas of the body. and auras leading up to the larger seizures are no exception. It could be that his aura signals his sinuses to drain, just like one of my auras is that my mouth fills with saliva. I would still mark that down.

 

[englishp]

Rae--I never thought about the runny nose being an aura. I looked at it as a trigger. That makes perfect sense since he drools uncontrollably during seizures. I've taken away the DS "just in case".
Thanks Nak...I'm just so new to this that I don't know what to believe. I think eventually I will get comfortable enough with my own gut instinct to believe what I see...instead of what I'm told.
He has been tested in the past for allergies (as a baby) and all we found was a candida yeast overgrowth that had caused two years of ear infections resulting in two sets of tubes. We have treated/still are treating with probiotics and have almost NO signs of allergies/colds at all anymore.

 

[donnajane]

On my 15months old last EEG his eye's rolled back when they did the light test but Nureo said his brain waves basically didn't alter but the girl doing the EEG saw his eyes go back and it was on the video they took while he was on the EEG. He said he will just monitor it.
They are still searching for a diagnosis with my son's seizures and other weird and wonderful things so this is just another piece in his puzzle.
With Dr's my theory is if i don't feel right with what they say and "mummy instincts" tell me to keep looking I do as I am my sons advocate as he is to little to even speak yet. I would rather be called an over the top mum for questioning things than not speak up and have something to be wrong and it affect the quality of my little mans life.
Good luck with eveything.
Donnajane

 

[Loopy Lou]

My EEG didnt show anything with the strobe light test, but certain things can cause partials or make me feel distinctly uncomfortable such as patterns with opposite colours (ie black and white, purple and Orange, red and blue) and 3d films. They don't do tests for these in EEGs though.

 

[jyearta]

Hi englishp,

If I loss sleep even as little as you spoke about 1 hour to 1 1/2 hours, this does affect my seizure.

If I push myself to hard working this too affects my seizure. Maybe your son gets tired playing without him realizing it.

I had never connected these things until I joined CWE. I've learned so much here.

Your doing a good job recognizing these symptoms in your son.

 

[englishp]

The late bedtime happens after baseball games. I think extra tired and late bedtime together make the difference...I'm learning.

I've severely limited the 3D game play...30 minutes per day. I thank all of you for the encouragement. I just feel as if I'm wading through a fog when it comes to finding out what will work for Griffin.