Newly diagnosed Aspergers, EEG, explaining to son

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MomofLucas
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27 Jul 2011, 1:15 pm

Background: I have had to explain to my (7 yo) son in the past that he 'thinks a bit different than other kids.' We had the school start him on social skills training and he was already in language classes, so we had to explain at least that much. Also he wanted to know why he had to take so many tests with the school and now with the neuropsych. I've told him that he thinks different but that is nothing wrong with that and that he is stronger in some areas than other kids. However, one of the tests the neuropsych did, with letters flashing on the screen had results that have led him to recommend a trip to the neurologist for an eeg to check for seizures.

Question: How do I explain to my son that there is still nothing wrong with him when the doctor wants to test his actual brain? I don't want to worry him, because he tends to worry alot. But if I tell him nothing is wrong and something turns out to be he'll ask me why I lied.



PaleBlueDotty
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27 Jul 2011, 2:11 pm

Is he curious? Can you maybe tell him that scientists hook up people with no health concerns to EEG and fMRI just to find out how the brain works and that neuro-science is at the forefront of science and every single day new facts on how the brain works are found and presented?
Engage him in an adventure. It greatly helps that EEGs normally do not involve syringes or other unpleasant or painful treatment.
Here is a brilliant website to get him interested in the brain.

link: THE BRAIN FROM TOP TO BOTTOM

I do not know how the EEGs nowadays are carried out, but I had to regularly undergo control EEGs and MRIs for my seizures as a child, and to be honest I quite liked it!
It was still the days when the electrodes were dipped into a special solution ( it felt nice and cool on my scalp ) to improve the transmission and they were attached to a net of hole-punched rubber bands, which held everything in place.
It took a long time to attach and the actual session involved interaction like opening and closing eyes, NOT to clench your teeth, and strobe light.
I found it exciting - I looked like an alien with imprints of electrodes on my forehead afterwards and seeing the printout of my brainwaves pouring out of the old fashioned printer to the floor in a big box was just awesome, :lol: - my brain is producing this graph? REALLY?
Maybe you can enthuse him with all the technical stuff, explaining what is being checked, looking at the actual reading and pointing out the wave activity (and fingers crossed, hopefully no spikes, :heart:).

However, you might have been asked to stay for an ambulatory EEG, which I have no expereince with, but I found a very good video, no scary seizures shown which could frighten him, but some strobe lighting, so do not let him watch 2:38 until 2:48.
Also, right click on the youtube video before starting to play it and choose to play it in a pop-out window.
He will not see the other video suggestions on the side, some of which show seizures in children.

[youtube]http://www.youtube.com/watch?v=NSE4qbIuUxI[/youtube]

And there is always the" better safe than sorry " approach. But that one works better for parents, :wink:.



MagicMeerkat
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27 Jul 2011, 3:51 pm

I actualy had a VERY bad expirence with my first EEG. I should have been given general anestesia for it because I could not sit still for very long and they had to keep retarting the EEG over and over again because I would have a twitch. I suppose they would have restarted it if I had a grand mal seziure. But it was tramatic and I wasn't even allowed to hold my stuffed animal. It was a very tramatic expirence for me and for years I had EEG related nightmares. I'm weird, but I just thought you should know.


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jojobean
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28 Jul 2011, 12:10 am

I have seizures that were hard to catch but are potentally fatal, so I had alot of EEG's as a kid and an adult.

They are not too bad for me. They first hook me up with glue and wires and that takes a long time. Then they do strobes and noises and other things to try to trigger a seizure. they may also ask you to keep him awake all night before in order to make him more suceptible to having one during the test.

As far as trying to pretend there is nothing wrong... this is not really one of those tests in which you can do that with a smart kid. So bs-ing him will only cause him not to believe you when you say that he is different not weird. Just be honest with him.
"One of your tests brought up concerns that you might be having minor sezuires. A seizuire is when your brain has surge of electricity that temporarly short circuts the brain. She thinks yours are mild. Many, many people have seizures, in fact they developed a whole subset of medicine to study them and treat them. If you are found to have seizures, there is medicine to treat that. Eliminating seizures will be good for helping your brain grow strong and healthy."

In all honesty, if he is having seizures...the EEG may not catch them the first time...or even the fourth time. It is kinda like trying to predict where lightning will strike. To really catch them, he may need a 24 or 48 hour EEG. Which electrodes are hooked up to a small box that digitally records the brainwaves and he can walk around and do whatever he wants. I recomend keeping him out of school while they do this though. They usually wrap his head so it wont look like he is an alien.


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PaleBlueDotty
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28 Jul 2011, 4:29 am

jojobean wrote:
As far as trying to pretend there is nothing wrong... this is not really one of those tests in which you can do that with a smart kid. So bs-ing him will only cause him not to believe you when you say that he is different not weird. Just be honest with him.


I agree, I always was told the truth, even when the consultants assumed it could be a tumor, which caused the seizures, which it was not.
He will pick up on your anxiety regardless of you sharing your concerns or not and exactly like jojobean said, this is not a good time to undermine the trust between parent and child by withholding information. Thinking back to my childhood this would have increased my worries immensely.
As a child you are exposed to all these tests, which in themselves are strange and worrying. You as a parent are there to make sense of all for him and give him a feeling of unconditional support and some degree of security.
I hope your son and your family will be fine and don't forget, WP is always here for you, :wink: .



Chronos
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28 Jul 2011, 2:55 pm

The AS and possible seizure disorder are two separate things. That you have combined them in your had is analogous if he had gone to one of these AS/LD tests and the tester realized he had a rash that looked like lupus and advised you sent him to a medical doctor.

The thing about children with AS is, most of them know they are different somehow, but they don't really how they are different. They usually don't think things like "I have a hard time socializing and with changes to my schedule and this is a problem", so they don't actually struggle with their weaknesses in the way adults do.

I would just tell him the tests are to see how he thinks because some people think in more interesting ways than other people.

Of the EEG, I would just tell him the test is to see what his brain waves look like. If it turns out he does have a seizure disorder, then I would tell him and explain what that means.