In my previous posts I described the beginning days of when I first noticed my son’s symptoms of Tourette Syndrome.  As indicated earlier, it started with sniffing and humming, which went on for several months.  Then in January, my son’s tics presented themselves with yells and severe body jerks.  By the time we got to February the tics were getting worse.  The yell had changed to a scream and the events would go on for hours.   The scream was like a scream of pain.  It never changed in sound or intensity and would go on and on.  I can’t tell how awful it was for me, his mom, listening to my son sounding like he was being tortured, and having him beg me to help him, to make it stop.  Unfortunately there was nothing I could do.

After these events went on for a couple of nights in a row, I called our neurologist and he said I should bring him in.  My son also had epilepsy and I wanted to know if these symptoms were related in some way.  We discussed with the neurologist what was happening, and while we were in his office my son had some of these erratic jerks.  The doctor said to me that they were not epileptic seizure related and it appeared to him that this was a conversion disorder, and my son was having non-epileptic seizures (NES).  He said the key indicators were the erratic type of movements,  the long durations of the events, the triggers, and the frequency.   I asked what we should do, and he suggested I have a talk with the neuropsychologist and develop an action plan. 

So we left the neurology office with more confusion than when we went in.  Once I got home I began researching non-epileptic seizures.  I found that non-epileptic seizures are attacks that may look like epileptic seizures, but are not caused by electrical disruptions of the cerebral cortex.  These seizures are sometimes referred to as pseudoseizures, but  the term is not preferred, because there is nothing false, fake or insincere about nonepileptic seizures to the patients who has them. In their view, they experience real seizures.  Around 15 in every 100 people with non-epileptic seizures also have epilepsy.

For some patients with nonepileptic seizures, the seizures are a manifestation of trauma, which is also known as Post Traumatic Stress Disorder.  This characteristic didn’t fit with my son.  I was not aware of any “trauma” that he had experienced.  I also found out that these seizures were not consciously produced and were not purposeful.  One type of non-epileptic seizures is called organic non-epileptic seizures.  Organic non-epileptic seizures have a physical cause (relating to the body). They include fainting (syncope), and seizures with metabolic causes such as diabetes.  Because the organic NES have a physical cause, they may be relatively easy to diagnose and the underlying cause can be found.  This did not seem to be true with my son.  There is also a second form of non-epileptic seizures which have a psychological cause. They are psychological because they are caused by the impact of thoughts, anxiety and feelings. 

Proper and correct treatments of non-epileptic seizures mainly depend upon the various causes or reasons of the  seizures. The neurologist,  nurse and psychiatrist or psychologist should assist in deciding the right treatment. If the seizures have an organic cause, the underlying condition should be treated and the NES will desist over time.  There are a couple of methods of treatment for  the other non-epileptic seizures, but the treatments only deal with the stress and anxiety aspects of the seizures.  Treatment can include professional psychotherapy, relaxation exercises, bio feedback, medication, and stress management techniques. 

We tried all of this for my son.  In addition were worked with a doctor who had some success with vitamins and supplements.  We did this for about six months with no success and a lot of money spent for nothing.  We also were trained on doing bio feedback, which once again didn’t help much and cost a lot of money.  We were seeing a psychologist with the intention of getting my son to identify the triggers to the events and then to learn techniques to prevent the seizures from happening or at least reducing the duration of them. 

Meanwhile, my son was missing quite a bit of school.  His seizures were extreme, causing him to fall down, or jerk severely.  In addition he was having a difficult time getting sleep because the seizures would go on and on in the night.  Our neuropsychologist wrote up a plan and instructions for the school about how to handle these events.  Soon the school started harassing me about the absences.  They had no idea how bad the seizures had gotten. 

Out of anger I took my son to school, even though he was having seizures as we walked into the school.  I took him to his classroom, and left him.  I knew they had to directly experience these event in order to understand what was going on.  Meanwhile, the principal wanted to meet with me privately once my son was situated. I told him that they were not prepared for caring for my son while he was at school.  I explained that my son could not even walk down the hallway without having jerks and falling down.  In addition he shouldn’t be holding something in his hands when he has a bout of these seizures, such as a pencil, because he could hurt himself.  He also would have a hard time sitting at his desk when this happened, because the jerks were so severe.  Even more important, he should have some privacy when these events occurred.  It was obvious that the principal had no idea how bad it was.   I told the principal that we could develop a plan for what needed to be in place before my son could come back to school.

I brought a letter from the neuropsychologist which explained what we needed to do.  My son was going to come back to school on a part-time basis.  In the classroom my son would have access to a bean bag chair, that I provided, so that he could sit and not injure himself.  The school was going to screen off an area in the room, along with the bean bag, which was a place for my son to go until the seizures had calmed down.  My son would have an aid with him to make sure he doesn’t get hurt.  And the school would provide a tutor so that he could keep up with his studies. Toward the end of my discussion with the principal, here came my son along with his teacher and the nurse.  He was having a bout of seizures. I told the principal that we would return once all of these things were in place, and I took my son home.

At the time when this was happening, I had no idea what a mistake all of this was and that the school situation was going to go from bad to worse. 

To be continued . . .

This is a post that is a part of series of post. To see more on this topic check out the related posts below.

Related posts:

A stunning realization . . .
An IEP, math, dysgraphia, some sniffs and some hums . . .
The beginning of an IEP . . .

  1. WI Snowflake says:

    Thanks so much for sharing your story. I know it is hard, but be strong. Come back often. Hopefully I will have posts that will intrigue you. Take care.

  2. Cindy,

    I have two son’s both affected by an extremely rare genetic disorder called X-Linked Alpha Thalassemia M/R Syndrome. Both boys are severely mentally and physically delayed and non-verbal. So, can they cannot tell me what is going on with them. My youngest son, now age 15, experiences these types of seizures. He has had them for most of his life. They look very much like a seizure; however, you can interrupt him and stop them. He is fully aware of what is happening to him. It is almost as if he were doing these on purpose. Here is a description of what he does: he gets down on his hands and knees, crosses his left ankle over the right, pushes his tongue against his bottom lip, angles his head to one side and becomes very hypertonic. He rocks back in forth and gently bangs his head either on the floor, your leg, or some other object. He was hospitalized when he was a toddler because he was having them all day long. The doctors in the ER could not really stop them so they gave him some medication to just completely put him out. While in the hospital, they did EEG tests and an MRI. The EEG tests were negitive; however, the MRI discovered what they call a Hamartoma located in the tactile plate region of his brain. Hamartomas are non-malignant type tumors composed of tissue but not brain tissue. We were told that this particular area of the brain works as the train station for all the signals and he has a boulder sitting in the middle of it. They said that because he has had it since birth, that the signals will reroute. This seems to be the case but he still has the seizure like episodes. We simply make sure we tell everyone that provides care for him so they don’t call an ambulance when they happen. Anyway, I just wanted to add this to your blog. I appreciate you sharing your blogs with us.

    David Hughes
    HealthShare Groups