An Autism Diary

A day in the life of David Hartley

Seizure Update

A quick update to catch you all up on the seizure scare with David.

After being told quite sharply (after me trying for 2 and 1/2 weeks to get an answer) that David’s EEG results came back normal and there was nothing to worry about, and then being told that he must be faking the symptoms to which I had a real problem with hearing (how does a severely delayed kid “fake” seizure symptoms when he doesn’t even know what a seizure is???), I have now found out that my son has been scheduled to see a neurologist this March.  Thanks to a friend I was able to call earlier today, I am not worried much about it, but it all still hits me as kind of strange with the way everyone is acting about this whole thing.

Advertisements

9 Comments

  1. Sorry, a little harsh and blunt up there. Still frusterated by the whole experience I guess.

  2. Sounds frustrating. You are doing a good job. March is a long time to wait but maybe they will have some answers then. Deception sounds ridiculous even laughable to me. As I have said “I am not a doctor” I was a qualified nurse for a long time. I have heard of seizures that are caused by life frustration and have no organic cause. They used to be called “hysterical seizures” but this term went out of fashion because (a) the patient doesn’t know they are doing it. (b) hysterical sounds like a value judgement. I believe it is now called “non epileptic seizure” Now your boy may not have any of these. The good news is there are no lesions on his lovely little brain and what ever is going on will be revealed eventually.
    Cyber support to you. : )

  3. I’m sure that whatever it is, he isn’t faking this behavior. Beth’s eye rolling and tremors which I was certain were seizures didn’t show up on Bethany’s EEG either and it was suggested that it was just a behavior. Turns out this behavior is medication side effects! Is David on any medication that could account for it? Perhaps his zoning out is an autism thing. Anyway- glad it wasn’t seizure activity. I’ll continue to pray for you guys!

  4. Thank-you both for the comfort and support. To be honest, it’s almost like they’re trying to say there’s no chance he has seizures while at the same time say that they think he does have them. That’s what really is starting to confuse me. Then the side comments here and there about it just being “fake” or “behavior” based is making the whole thing frusterating for sure.

    The doctor that was administering/seeing over the actual EEG test though warned me that not all seizure activity shows up on EEG’s and after an evaluation of his history of frequent regressions and the severity of some of them had her wanting a more thorough look right from the start (MRI) but our insurance blocked her from being able to do so.

    I’m not thrilled about waiting until March for more answers because I tend to lean disproportionally towards the worry wart side of things, but at the same time I am trying to apply the advice I got after talking to a couple friends yesterday. Sit back, let go, try to relax, and just enjoy David. Take on the seizure issue again when March comes.

  5. So sorry to hear of the frustration from the medical community. But that is something I hear about and have experienced over and over again. I think medical schools need more classes on bedside manner. I’ve also learned you must trust your gut. Those with degrees may be experts in their field, but YOU are the expert on your child. Always follow your instincts even when they contradict what the experts and the test results might be saying. Keep pushing until you are satisfied you’ve gotten your answer. Every instance I know of where the parents suspect something is off and the experts are saying their tests don’t show anything, in the end the parents were right. God gives children to moms and dads and they know best.

    • Thank-you for the encouragement. I appreciate it greatly : )

    • how is everything going on your end by the way? : )

  6. Sit back, let go, try to relax, and just enjoy David/Life.
    Good advice for all of us. : )

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: