Posts Tagged ‘conversion disorder’

When my son was in third grade he started to have these unusual movements, which later also included vocalizations.  The movements became so severe that my son was not able to go to school because the incidents would continue for hours and hours.  Typically they occurred in the night, which in turn deprived him of sleep.

My son also has myoclonic epilepsy, occurring in the frontal lobe, and upon observing and conducting an EEG, the neurologist indicated that the movements did not have the characteristics of epileptic seizures.  He concluded that they were non epileptic seizures.  We then began work with a neuropsychologist regarding how to deal with this unusual activity.

After I got the medical community working on the seizures, I also had to deal with my son’s school  My concerns with school was that I didn’t think they would be able to deal with these events while providing a safe environment to continue his education. Eventually, I took my son to school.  They were shocked about what was happening.  My son went to class while I talked with the principal, nurse and school psychologist.  My son walked into the school as he was having these movements and continued to have them in the classroom.

I told the principal that they were not prepared to have my son in school. My son’s movements were extreme and he could potentially hurt himself while being at a desk.  Who was watching him as he walked in the hall and prevent him from hurting himself if the events should cause him to fall down?  Who is making sure he doesn’t poke himself with a pencil?  What are you going to do about the loudness of his yells?  How are you going to give him some privacy?  How are you going to handle the other students when these events happen?  My son’s vocalizations sounded like yells of pain?  Who is going to differentiate these movements from his actual epileptic seizures?  Soon, here came my son’s teacher along with my son.  She said that he could not be in class yet until they got a little more organized.  In the end I told the school I would obtain from our neuropsychologist recommendations for accommodation.  Once those items were in place we would re-convene coming to school.  Then we left.  The second reason for this decision was the school could not accommodate his ability to learn when he would have these non epileptic seizures for hours in the night, causing loss of sleep.  I needed to be able to teach him when he was capable of being taught.  The school did not understand that a young man can not learn while his body is jerking and he is uncontrollable yelling.  Or, he is not able to learn when he has only had two or three hours of sleep.

A couple of weeks later the school contacted me to review their plan and accommodations that they had in place for my son.  It included gradually getting him back into the routine of coming to school, starting out with an hour and slowly working up to full-time.  To compensate for the abbreviated school day they provided him with a tutor, which is where I made one of my mistakes.  The tutor they selected was his actual third grade teacher.  Later I found out that she was one of the reasons that was causing my son’s anxieties, which then triggered the non epileptic seizures.  They created a screened off area of the classroom where my son could go while he was having one of these events.  It gave him privacy and it contained a bean bag to provide some safety.  Finally they provided an aid that would accompany my son wherever he went.  This also turned out to be a big mistake.  The aid would say things implying my son was faking these seizures, which in turn triggered non epileptic seizures.  It was a vicious cycle.

In the end, my son finished the school year, but this event was the beginning of a continuous decline in his ability to learn in the public school setting.  My son is now in 7th grade and this year we decided to do homeschooling because the school could not accommodate for his needs and continue providing him a “productive” education.  The trigger that made me make this decision was that in 7th grade he was working on the same math that he had been working on in the 3rd grade.  They were not making any progress.  Meanwhile, I knew my son was a bright individual, especially toward math.  Before he even went to kindergarten he had figured out on his own the concept of addition and subtraction.

It is now 4 years later and my son is still having these events, but they have drastically decreased as a result of taking him out of school.  We have worked with neuropsychologist for the last 4 years with the goals of 1) identifying triggers for the events, 2)what to do when he has an event and 3)general lesson on how to reduce his anxiety.  This also included learning bio-feedback. While seeing this neuropsychologist, we identified the fact that my son was having a combination of epileptic seizures, non epileptic seizures and Tourette Syndrome.

One other topic that you may run into is P.A.N.D.A.S., which is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. When my son was young, from the ages of one to two, he had severe ear infections, which eventually led us to have tubes put in his ears, which completely eliminated the ear infections.  Later, I found out that when there were outbreaks of strep throat at school he didn’t get sick himself, but was a carrier of it which usually caused me to get strep throat.  Of course this is all theory on my part, but it is interesting that my son may have a relationship to P.A.N.D.A.S.

Hopefully this post helps with your understanding of non epileptic seizures.  I am including below some definitions of some of the term you may hear about with non epileptic seizures or with Tourette Syndrome.

Psychogenic non-epileptic seizures (PNES):  , also known as Non-Epileptic Attack Disorders, are events superficially resembling an epileptic seizure, but without the characteristic electrical discharges associated with epilepsy. Thus, PNES are regarded psychological in origin, and may be thought of as similar to conversion disorder. It is estimated that 20% of seizure patients seen at specialist epilepsy clinics have PNES.  The differential diagnosis of PNES firstly involves ruling out epilepsy as the cause of the seizure episodes, along with other organic causes of non-epileptic seizures, such as syncope, migraine, vertigo, and stroke, for example. However, it is important to note that between 10-30% of patients with PNES also have epilepsy. Frontal lobe seizures can be mistaken for PNES, though these tend to have shorter duration, stereotyped patterns of movements and occurrence during sleep.  The condition may also be referred to as non-epileptic attack disorder, functional seizures, or psychogenic non-epileptic seizures. Within DSM IV the attacks are classified as a somatoform disorder, whilst in ICD 10 the term dissociative convulsions, is used, classed as a conversion disorder.

Pseudoseizures or Hysterical Seizures:  While it is correct that a non-epileptic seizure may resemble an epileptic seizure, pseudo can also connote “false, fraudulent, or pretending to be something that it is not.” Non-epileptic seizures are not false, fraudulent, or produced under any sort of pretense.

Conversion disorder:  1.  A type of somatoform disorder in which unconscious psychological conflicts or other factors take the form of physical symptoms that are produced unintentionally.  2.  Somatoform disorder in which an individual presents sensory or motor symptoms that do not have a medical explanation

Somatoform disorder:  a mental disorder characterized by physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition, direct effect of a substance, or attributable to another mental disorder (e.g. panic disorder). The symptoms that result from a somatoform disorder are due to mental factors. In people who have a somatoform disorder, medical test results are either normal or do not explain the person’s symptoms. Patients with this disorder often become worried about their health because the doctors are unable to find a cause for their health problems. This causes severe stress, due to preoccupations with the disorder that portrays an exaggerated belief about the severity of the disorder.  Symptoms are sometimes similar to those of other illnesses and may last for several years. Usually, the symptoms begin appearing during adolescence, and patients are diagnosed before the age of 25 years.  Somatoform disorders are not the result of conscious malingering (fabricating or exaggerating symptoms for secondary motives) or factitious disorders (deliberately producing, feigning, or exaggerating symptoms) – sufferers perceive their plight as real. Additionally, a somatoform disorder should not be confused with the more specific diagnosis of a somatization disorder. Mental disorders are treated separately from physiological or neurological disorders. Somatoform disorder is difficult to diagnose and treat since doing so requires psychiatrists to work with neurologists on patients with this disorder.  (Wikipedia)

P.A.N.D.A.S.:  an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette’s Syndrome, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever. The children usually have dramatic, “overnight” onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceded by a Strep. throat infection. What is the mechanism behind this phenomenon? At present, it is unknown but researchers at the NIMH are pursuing a theory that the mechanism is similar to that of Rheumatic Fever, an autoimmune disorder triggered by strep. throat infections. In every bacterial infection, the body produces antibodies against the invading bacteria, and the antibodies help eliminate the bacteria from the body. However in Rheumatic Fever, the antibodies mistakenly recognize and “attack” the heart valves, joints, and/or certain parts of the brain. This phenomenon is called “molecular mimicry”, which means that proteins on the cell wall of the strep. bacteria are similar in some way to the proteins of the heart valve, joints, or brain. Because the antibodies set off an immune reaction which damages those tissues, the child with Rheumatic Fever can get heart disease (especially mitral valve regurgitation), arthritis, and/or abnormal movements known as Sydenham’s Chorea or St. Vitus Dance. In PANDAS, it is believed that something very similar to Sydenham’s Chorea occurs. One part of the brain that is affected in PANDAS is the Basal Ganglia, which is believed to be responsible for movement and behavior. Thus, the antibodies interact with the brain to cause tics and/or OCD, instead of Sydenham Chorea.  (information provided for by http://intramural.nimh.nih.gov/pdn/web.htm )

I am sure many of you have noticed the story about the 12 teenage girls in Leroy, New York who all have been having tic-like symptoms.  According to the news, this started out of the blue with all of the 12 girls.  This news story has been going on for over two months and  most recently hit the national news.

I will be honest with you that there needs to be more discussion about Tourette Syndrome (TS), but I am not sure if this news item is really doing those who struggle with Tourette Syndrome any justice.  The news sensationalism is starting to sound like the Salem witchcraft hunt.

I have seen videos of some of the girls and it does appear that they are having both movement and vocal tics.  According to the news there has been intensive investigations into this situation and it has been determined that they have not identified any specific environmental factors that may have triggered the phenomenon.  I think the CDC is also involved in the investigations.

Over the last two months the diagnosis has been referred to as being Tourette Syndrome.  Unfortunately that does not explain 12 different individuals experiencing TS at the same time.  Most recently, I see the diagnosis is changing from Tourette Syndrome to a diagnosis of conversion disorder. Conversion disorder, formerly known as hysteria,  is a neurosis marked by the appearance of physical symptoms such as partial loss of muscle function without physical cause but in the presence of psychological conflict. Symptoms include numbness, blindness, paralysis, or fits without a neurological cause. It is thought that these problems arise in response to difficulties in the patient’s life, and conversion is considered a psychiatric disorder in the Diagnostic and Statistical Manual of Mental Disorders 4th edition (DSM-IV). 

Conversion disorder can present with any motor or sensory symptom including any of the following:

  • Weakness/paralysis of a limb or the entire body (hysterical paralysis or motor conversion disorders)
  • Impaired vision (hysterical blindness) or impaired hearing
  • Loss/disturbance of sensation
  • Impairment or loss of speech (hysterical aphonia)
  • Psychogenic non-epileptic seizures
  • Fixed dystonia unlike normal dystonia[clarification needed]
  • Tremor, myoclonus or other movement disorders
  • Gait problems (Astasia-abasia)
  • Syncope (fainting)
  • Hallucinations of a childish or fantastical nature  [1]

I don’t think this flip-flopping of the diagnosis is doing any benefit for those who have Tourette Syndrome.  To some extent, it is implying that Tourette Syndrome is psychological.  This misnomer has been a battle that every individual with Tourette Syndrome has faced. The big question: Is it real or is the individual purposely doing the tics?  If you have had any experience with TS, it is obvious that physiological that may be affected by psychological factors, such as anxiety.

This morning I saw two of the girls on a morning television show and they appeared to be frustrated because they knew no more today about what is wrong with the them than what they knew two months ago.  It almost sounded like if they had a specific diagnosis, it would imply that it could be treated and they would be cured.   When I heard this, I thought to myself, stand in line.

There are thousands of people in the United States, and all over the world, who would love to have some answers for Tourette Syndrome and have a cure for it.  From a research standpoint, it is my understanding that we are not even close to understanding Tourette Syndrome, let alone having a cure.

I am very glad there is discussion about Tourette Syndrome, but I wish it was more factual rather than being referenced with hysteria, or as a plague, or with conversion disorder.  I hope this does not negatively affect the funding for research for Tourette Syndrome.  We need research to continue and we need funding to do the research.  I am concerned that this flip-flopping of diagnosis is muddying the waters which could potentially affect people’s reaction to Tourette Syndrome.  To prevent this from happening, I think people need to talk about it more.  Get the facts out.  More importantly I expect a statement to be made by the Tourette Syndrome Foundation. I think it is best that we try to control the discussion, or at least add some credence to it. Instead, I hope this news story can turn into a positive. These 12 girls may provide a unique research study for evaluating Tourette Syndrome. Hopefully research teams can get involved and turn this news story into a benefit for Tourette Syndrome research.

You may ask why does this concern me so much.  My son has Tourette Syndrome, and at one time in his diagnosis stages conversion disorder was brought up. That was four years ago. Since then the doctors refer to his condition as Tourette Syndrome or non epileptic seizures (my son also has epilepsy). It depends on the type of tic being discussed.

Regardless of the label, Tourette Syndrome has put a heavy weight on my son’s life, and I don’t want some negative publicity making things worse than they already are.  Over the years the media has sensationalized Tourette Syndrome.  Tourette Syndrome patients were commonly seen as oddities on talk show stages.  I thought we had got beyond this.  Unfortunately the media loves sensationalism, and they are back at it.  See the following sensational headline, which references the plague.

For more information about the LeRoy incident see:  The ‘mysterious’ Tourette-like syndrome plaguing a N.Y. town

[1] Conversion Disorder, Wikipedia,  http://en.wikipedia.org/wiki/Conversion_disorder

My son has a number of health issues and sometimes it is difficult to tell what is going on.  His epilepsy gets confused with non-epileptic seizures and his tics.  The following is a response plan that a neuropsychologist wrote to assist the school with dealing with these events.

Take a look at the plan and tell me what you think.  I would really appreciate the feedback.  We are about to revisit this document in the near future.  Some of this document is irrelevant because it was written when it was difficult for my son to go to school and includes some steps to deal with that situation.  Today, my son is in school but there are constant interruptions due to the non-epileptic seizures.  In the last week I have had to rush to the school 3 days out of the last 7 days.

I will be honest with you I am not confortable with some aspects of this plan.  The topic of non-epileptic seizures is a very sensitive topic.  We have experienced school personnel interpreting these events as being purposeful by my son.  As a result of this type of accusation my son’s anxiety raised and then percipitating more movement events.  It was a vicious cylcle.  This year he started a new school and I was hoping we wouldn’t run into the same behavior on behalf of the school. 

I would appreciate you taking a moment to read this.  I need all of the help I can get.

The attending neurologist working with the patient has determined that he has episodes of non-epileptic events that may look very similar to seizures, but are not actually caused by abnormal brain activity. The patient will need to be evaluated to determine if these events are some form of movement disorder, Tourette’s disorder, or if they are Non-epileptic seizures. These events are not epileptic in nature and therefore do not require the medical intervention that would be necessary if the patient were having an epileptic seizure. These episodes are not purposeful or intentional. Though they are not epileptic seizures, they still are a seizure. Depending upon the origin of these events (which again is still being investigated) they are likely exacerbated by stress or anxiety. In this situation the mind is causing the body to respond physically to these negative emotions, similar to people who have stomachaches or headaches when nervous or stressed. If patient’s events are determined to be tics associated with Tourette’s, anxiety can play a large role in how long these events last. Again, the patient does not have control over these movements, and they can be exacerbated by stressful situations.

It is essential that family members and school staff respond consistently to these events in order to minimize their impact on daily functioning. Regular visits to the school counselor are often helpful in providing additional support during school for social stress. It will be important for the patient to have designated times in which he can use relaxation techniques learned in therapy in order to reduce the number of events he is experiencing. If these events are determined to be non-epileptic seizures, it is possible that he could learn ways of preventing them altogether in therapy. It is important for him to practice his relaxation techniques throughout the day. This will require that he miss some class (usually in the guidance office), but it will eventually allow him to experience fewer events.

Description of the patient’s events: The patient’s events are characterized by burning in his eyes and jerking of his extremities. Sometimes the jerking movements appear as extreme thrashing, eratic movements. At times he hold his breath.

Again, he is still undergoing evaluation to determine exactly what these events are. What we do know is that they are not dangerous to him, and will not result in any long-term physical difficulties. It is important to help define them and get them under control, so that they do not further impact him emotionally. It has been noted that his events worsen when he is under stress or anxious. The patient’s events can last from a few minutes to hours. He often has difficulty focusing on anything else when he experiences the movements. However, distraction has helped to reduce the severity of the movements. Therefore, providing the patient with distraction during these events, and not focusing on the movement, could actually help them be less severe. While it is difficult to urge the patient to continue normal activity during events, this is actually the best way to help reduce or eliminate them altogether.

Whether these events represent tics, movement disorder, or non-epileptic seizures; helping to keep the patient in as regular a routine as possible is essential. If he does not maintain a routine this will only increase his anxiety, and can cause additional difficulties to develop. It may be necessary to alter his schedule to reflect the difficulty he is having at this time. His regular day may only allow for one hour at school and then home schooling for the rest of the day. During the time that he is at school it will be important to engage him in normal activities and to keep him there even if he has one of his events until the designated time that he will leave. This predictability will help the patient feel that he knows what to expect and hopefully help to reduce his anxiety.

The following section describes how to respond to the patent and to other students if the events happen while at school:

1. If you see that the patient is having an event or if he states that he is worried he may have one, talk to him briefly about how he is feeling.

2. It is alright to give him brief reassurance and to tell him what you are going to do in response to the event, such as: a. “You are having one of your events. It’s ok. You will be fine. Right now you need to have some time to calm down. I am going to stay close by but step away so that you can have some time to relax.”

OR

b. “You’re having an event, but you are ok and safe. I am going to turn off the TV, radio, etc. and give you some time to rest.”

c. After this brief reassurance in is best to stop interacting with him until the event has stopped.

d. If this occurs in class and does not last for an extended amount of time, it may be best just to watch him closely but continue on with class.

Once the event is over, it may be helpful for him to leave for a few minutes to calm or rest. Let him decide if he needs this.

3. Ensure that he is in a position where he will not get hurt. It is not recommended that he be moved very far during the event. If he is always sent out of the room, this will draw attention to his situation and may increase his stress and anxiety. Therefore, if he can stay in the room after the event, this is recommended.

4. If he falls, keep him away from sharp objects, do not place something in his mouth, he cannot swallow his tongue. This won’t likely happen because he does not tend to fall with his events.

5. It is best to avoid holding or restraining during an event.

6. If others are present in the room, if possible, they should be instructed to return to their normal activities without interacting with him until it is finished.

a. We encourage you to use language like “XXXX is having an event, but he is okay. Let’s let him be, I’ll take care of him while you return to your work.”

b. If the person is at home, all others should leave the room during an event except for the person who will monitor him for safety.

7. It is not appropriate to give Jamal medications, to send him home from school, to send him away from class, call the paramedics, give him a prize to stop, or allow him to avoid certain activities in response to an event.

After the event:

1. Note what happened just before the event started to happen. Is there anything that could have caused an increase in stress?

2. It is really important that “normal” activities typical for the patient be resumed as soon as is possible to reinstate normalcy and minimize disruption to his daily life. Neutral, calm responses to these events will help him to feel calm.

3. If he appears stressed, worried, or fearful, it may be necessary for him to have a brief period of time before he resumes the activities that he is involved in (i.e. maybe a ten minute break, but he should not need more than that).

4. He should not be removed from an activity or asked not to participate, because this will give him the signal that something is wrong, or that he cannot do something. He is still capable of engaging in normal daily activities, and this should be encouraged.

This plan was developed collaboratively by the patient’s medical/psychosocial team on the epilepsy unit of the XXXX Hospitals and Clinics of  XXXX

The last couple of weeks have been really crazy for my son and myself.  My son has a number of health issues including epilepsy, type 1 diabetes, tourette syndrome, and non-epileptic seizures.  Last week his school called me and reported that he was have a round of vocal and movement tics that was lasting hours.  Since it was not stopping I had to go pick him up.  He came home and slept.  His tics can be extremely physical and they wear him out. 

The next day the school calls again and reports that he had several clustered seizures.  They ended up calling 911 and he was taken to the hospital.  When I got to the hospital all was well.  The seizures had stopped.  The hospital did a blood work up and sent us on our way.  Once again my son came home and crashed.

By this time the school was getting anxious and were insisting that we consult with a doctor to see what can be done.  This is pretty frustrating.  There are no miracle pills that make seizures go away, epileptic or non-epileptic.  Likewise for tourette syndrome.  I could tell the school was uneasy with the whole situation.  So, I kept my son home on Friday so that I could watch him to see if the seizures occurred again.  They didn’t.  Meanwhile the school is breathing down my neck anxiously waiting to get notice of the miracle cure.  I watched my son over the weekend where he had numerous tic bouts, but no seizures.  It is then that I suspected what the school thought was seizures was actually either a tic or non-epileptic seizures.  Even so, I felt like I was being pressured by the school to do something to help my son, or maybe to make their job a little easier.  [Yes, that is vicious, but that is how I felt.  In the past the school nurse had suggested other medication such as medications for ADHD, and valium.]

On the following Monday I tried to get in to see the neurologist, which I knew would be impossible because he is usually booked months in advance.  I didn’t want to go to a different neurologist because my son has a pretty unique condition and I needed to stick with the neurologist that was most familiar with my son’s case.  Good neurologists are hard to come by.  It took me almost four years before I found this one.

Since I couldn’t get in to the neurologist, I tried to get into my son’s pediatrician.  My goal at this point was to discuss the tics and/or non-epileptics seizures, especially when the events went on and on.  Of course I couldn’t get in to see his regular pediatrician, so I took the next available doctor.  We went in and the pediatrician suggest that we try an anti-depressant.  We had tried this in the past with no positive results, but I thought maybe this time would be different.  My son is older, and we didn’t really adjust the dosage. 

I will be honest with you I was not comfortable putting him on the medication.  I have had some personal experience with anti-depressants and have experienced the positive change that they can make on your life.  Even so, I was hesitant because he was only 12 years old and what if this wasn’t really necessary.  There are dangers of being on anti-depressants.  Stories of kids attempting suicide kept running through my head.  Then again, my son’s quality of life was greatly affected by these movement disorders.

Coincidently, the following Monday we were going to see my son’s neuropsychologist.  We briefly talked about what was happening and that he was now on anti-depressant medication.  She said that the medication that was chosen is the best choice and is the only anti-depressant that has been researched for children.  That made me feel a little better.  Coincidently I ran into the our neurologist’s nurse and she said she could fit me son in to see the neurologist after the neuropsych appointment.  Wow, bingo! 

So we saw the neurologist.  We discussed what happened and he said that he didn’t want to change anything until we see a pattern or a reoccurrence.  They also were going to check his medication levels via a blood test.  There is a possibility these seizures happened because his levels were low and causing “break through” seizures.

For the next week my son had bouts of tics and/or non-epileptic seizures.  I saw no evidence of seizures.  Then today, the school calls and reported that my son was having seizures.  By this time I did not trust the school’s ability to distinguish between a seizure and either tics or non-epileptic seizures.  They requested my permission to call 911.  In the past it was my policy when in doubt go to emergency.  Meanwhile my son, who is no longer having events, says he doesn’t want to go to the hospital.  I talked to the nurse to get a better description of what was going on.  She said that it all started with tics and then became a cluster of short seizures.  She then described what was physically happening.  At that point I told her I was on my way and that she should not call 911.  I know this was a big risk, but no one knows my son and his health issues better than me.

I got to school and my son was asleep.  I talked with the school nurse and gave her permission to talk to either our neurologist or his nurse.  I asked her to describe what happened and they can give us guidance.  Meanwhile, I took my son home, and he went to sleep.  At this point I was pretty confident these were not seizures.  I knew I could not convince the school nurse that these were not seizures.  We had been home for about an hour and the neurologist’s nurse called.  Before she could even talk I said, I don’t think they are seizures.  She said that our doctor also agrees.  She tells me that she had a long talk with the school nurse and was hoping she had talked her off the ledge.  She also said our neurologist wanted my son off the anti-depressant medication.  I really trust the neurologist, more so than a pediatrician.  I am a little bit relieved that we can drop the anti-depressant medication.

At this point I dread taking my son to school tomorrow.  The concept of non-epileptic seizures is very confusing.  My concern at this point is that the school would swing to the other extreme.  I would have to face that issue when it happens. 

Come back after tomorrow and I will update you on what happened.  Keep your fingers crossed.