Waiting on a Diagnosis, Frustrated, and Worried

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Kinjudith
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Date Joined Dec 2014
Total Posts : 1
   Posted 12/27/2014 8:34 AM (GMT -7)   
Hi, stumbled on this forum while searching for answers to 2 episodes that have happened with my 18-year old son. He is (was) a perfectly healthy young man with really no issue. Hadn't even been on antibiotics in years and years.

On Nov 19th, I came home from work to find him passed out/unconscious in the driveway. He woke when I shook him; however, was very disoriented and had no idea what happened. It was cold out and we think he had been outside for about 30 min to an hour and his body temp had gotten down to 96. Of course, I called 911 and we went to the hospital. By this time he was much more lucid but had no recollection of what happened. His recollection is "I was taking the trash out and remember coming out the front door, down the porch steps, and I remember thinking it was getting dark early. That's the last thing I remember."

ER did bloodwork, CT scan, EKG and all were normal. I was lucky enough to get him into a neuro the next day. Neuro didn't feel as though it could have been a seizure for several reasons: 1) a seizure would last a few minutes followed by a period of disorientation and the entire event shouldn't last more than 10-15 minutes and he had obviously been outside for at least 30 min to an hour; 2) there wasn't a mark on him; if he had fallen on concrete and had a seizure you would think he would have some sort of abrasions or scratches on him--it's almost as though he layed himself down.

However, neuro sent him for testing. His MRI came back normal. EEG did not. EEG came back with some activity in the left temporal lobe; however, the neuro didn't feel that this was conclusive enough to diagnose anything. He sent him for a sleep-deprived EEG on Christmas Eve and we don't yet have the results. All his heart tests have come back normal (echocardiogram and he wore heart monitor). All his bloodwork has come back normal.

Meanwhile, since Nov 19th, I thought everything was fine. Every time I asked him if he'd felt ok he always said yes. Well, he finally fessed up that about 2 weeks ago he "passed" out again after school. He says he came home did his normal thing like playing with the dog, etc. He went upstairs and he says he woke up sometime later laying across his bed. He says he felt fine all day and has no recollection of laying down or anything.

He says he was laying short ways across the bed and he says he knows he wouldn't have done that because he never comes upstairs and lays down. He always takes off his shoes, changes into comfy clothes, etc. So he knows something had to have happened but he didn't feel strange before and doesn't remember feeling confused after, either.

Also, forgot to mention that since Nov 19th, my husband and I have noticed that several times in the late afternoon/early evening he takes a nap on the couch or in his bed. This is highly unusual. He falls into a very deep sleep and it is hard to wake him. When we ask him about it he just says he is sleepy. He seems fine after his "nap".

He is an excellent student taking a rigorous schedule and is working diligently on college apps. (he is a senior in HS). He has no drug or alcohol issues and in fact, is pretty much adverse to anything like that due to some issues in our family.

Of course, he isn't driving (since Nov 19th) and I'm sure that contributed to him not telling me at first. He says he didn't want me to worry or to have to spend money on medical tests and since he didn't get hurt he didn't feel like I needed to know. But, his mood was strange and he began acting out which is very unusual. This is why he finally fessed up because he was scared and he was holding it all in from everyone. He says he is scared that his life will never be normal again.

I've read things about epilepsy as well as narcolepsy and despite what the neuro says, it does seem to fit more into a seizure category.

Any thoughts or similar experiences that could help shed some light while I wait for the neuro to call me back on latest EEG results?

I know that it can be hard to diagnose. If he has another episode, maybe someone will see it so we can try to determine if anything seemed "off" or strange prior to or after.
Thank you and I appreciate it.

Jennings
Veteran Member


Date Joined Nov 2014
Total Posts : 681
   Posted 1/11/2015 12:56 AM (GMT -7)   
My son, who was five years old when diagnosed with epilepsy, was having similar episodes where he would become extremely tired and lay down wherever he was. He would not remember laying down and would often seem confused after his naps. We would chalk it up to he's only five but then I saw a couple first hand and realized something was wrong. He was diagnosed with epilepsy after an EEG.

Did you revive the results from your sons sleep deprived EEG?
Generalized Anxiety Disorder
Panic attacks
Health anxiety
GERD

Lexapro - 20 mg daily
Klonopin - .5 mg 2x daily
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