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My son has a weird seizure disorder so I’ve  done quite a bit of research on epilepsy. In my research, I came across the Ketogenic Diet.

Some people experience seizure control using the diet–high fat/protein and low carb. And my theory is that  it works on some people  because a food sensitivity was removed from the diet.

Mystery Diagnosis aired a show about a boy who had strange “seizures”, it was finally diagnosed as celiac’s disease. His body could not tolerate gluten, a protein in wheat. The ketogenic diet would have worked in this case.

I wonder sometimes why Doctors don’t suggest food allergy/sensitivity tests more often.

Click the above link for an excellent report on frontal lobe seizures. I could not explain to others exactly what occurred when my son had his seizures–Case #3 in the report is what my son did–run for no reason with an extreme look of terror. He tried(many times) to get out of a moving car when he was in first grade just like the woman in the case. See my previous post for videos.

When I think about the Doctor who wouldn’t put him back on his anti-seizure medication in 2005, I get so angry. The Doctor questioned my parenting.  He said, “Something must have changed at home.” referring to my son’s “behavior”.

My son wasn’t taken off his medicine! The Doctor left the decision up to us. My son did not want to go off his medication because he knows what the seizures do to him. Anyway, the Doctor said this was the best time to go off his medicine–just before he starts driving. If he has a seizure after he has his drivers license, he will lose his license for six months.

I suppose he’ll take Driver’s Ed this summer. So our decision to never go off the medication is now fairly permanent. He will be on his medicine for the rest of his life and he is okay with that. I am too.

I’m thankful that we have health insurance because otherwise I think his medicine costs around $400/month.

The October 3o, 2008 issue of the Wall Street Journal had an article about how springing forward to daylight savings time might be detrimental to your health. Researchers found that heart attacks increased by 6% in Sweden the day after the change to daylight savings time. Falling back an hour resulted in 5% fewer heart attacks.

I’ve always hated the time change in the Spring and loved it in the Fall. Now I know why–we need our sleep!

And I can attest to what a lack of good quality sleep can do to a child.

My son has always been a quiet, shy child. Because he was quiet and shy, he did well in school. In Kindergarden he had the highest grades in his class and of course, I was proud of him. His first grade year was going along just as well until the Spring came around. Something changed in him. His teacher started sending reports home that he was being disruptive in class. That was SO unlike my child. I had read another Wall Street Journal article that said that children who didn’t get enough sleep were more likely to be hyperactive. So I wondered if maybe he wasn’t getting enough sleep. You see, at that time, he was coughing quite a bit.

I took him to the Doctor with my concerns. The Doctor prescribed Zyrtec for allergies. His Granny has allergies, so I believed that was the problem.

One evening, after being on Zyrtec a few days, he was in bed reading from Dr. Suess. He stopped reading mid-sentence, got up and began jumping up an down on the bed with a crazed look on his face. I have never been more afraid in my life. I didn’t know what it was, but it wasn’t “right”. And I blamed Zyrtec.

I set up an appointment  with the Pediatrician. I described what happened. The Doctor performed the now familiar neurology exam and referred him to a Neurologist. The Neurologist scheduled an EEG. The first EEG was normal and I didn’t see any signs of anything odd.

The occurrences continued. I took him back to the Neurologist who suggested a sleep-deprived EEG. My husband and I, with the help of my father, worked in shifts to keep my son awake. It was a miserable night. He was having the “episodes” often.

To get the electrodes on his head, I had to get on the bed with him and hold him down, because he had two to three events while they were wiring him up.

I apologize for the poor quality of the video.

The episode looks fairly benign, I guess. But if I had continued videoing within 15 – 30 minutes he would have had another and another. He wasn’t getting a good sleep. His heart raced. His pupils dilated and as you can see he looks like he doesn’t know what he’s doing. And he doesn’t.  Fortunately, by the time the seizures had gotten this bad, we had put the child locks on the doors of our cars, because if he fell asleep and he had a seizure, he would try to open the door.

The teacher said he was putting everything in his mouth–dirt, grass and he threatened to eat the teacher’s hair. He would get in front of the class to read stories he’d written–completely unlike him.

The anti-seizure medication is  a miracle drug in my opinion(Thank you Glaxo) and he began sleeping through the night without the constant interruptions  after about a week on the medication. He returned back to his quiet shy self.

When my son was in 5th grade it was decided to wean off the medication–with poor results. The seizures returned and he went for another video EEG.

In the video while he is awake, the seizure doesn’t start until after he is fiddling with a piece of paper which I believe is a lead that is supposed to be on his chest to monitor his heart. Notice how his fingers move and how he pulls at the covers and swipes his nose and then ends with his hands behind his head.

The Doctor said that maybe something had “changed at home” and that was the reason behind his behavior. But the only thing that changed at home was that we were no longer giving him his medication per the Doctor’s orders. The Doctor sent him home without medication that day and I was furious.

Of course, I took him to another  Neurologist(Dr. Poplawski) who put him back on his medicine. I’m pretty cheap and I don’t want to pay for medicine if I don’t have to. But in this case I have to.

I write all this because tomorrow(Tuesday) my son goes for an EEG and a visit to his Neurologist (Unfortunately, not Dr. Poplawski who moved away to be head of Neurology at a hospital in the western part of our state)who I’m sure will suggest to take him off his medicine. I don’t want that and neither does my son.

Good thing my son doesn’t read this blog. He’d be mortified that I posted these videos.

I’ve said in a previous post that story ideas are everywhere. The book I’m in the process of polishing came from research I did on epilepsy. You see, my son was diagnosed in 2002 with a rare form of the disease. One doctor believed it to be supplementory motor epilepsy which originates from deep inside the frontal lobe of the brain.

His seizures are not the normal kind. If I wrote about them, people wouldn’t believe me.

Here’s what happens:

His heart races, his pupils dilate, then his right hand comes up, he swipes his nose, then brings it behind his head. His other hand follows. If he is standing, he takes off running with his knees lifted high in the air. When it is over (when it was at its very worst–before medication) he would then grin this very strange grin. Very bizarre. Fortunately, medication controls all that.

But in my research, I found that in olden days women with seizures weren’t allowed to marry. I thought that would be a good conflict for a novel. That particular conflict, however, will not come until the 3rd book in my Secret Beauty Series.

Visit the Epilepsy Foundation for more information on the disease.

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