Archive for July, 2011

This a continuation of the post A new specialist for Tourette Syndrome…   In this previous post I described my son’s new doctor who specializes working with kids with Tourette Syndrome. He is not a typical doctor, but an expert in self-hypnosis, and my son enjoys talking with him. Our first appointment focused on the doctor getting to know my son and for my son to get comfortable talking to him. Dr Dan is a pretty funny guy and is fairly easy to talk with him.

This week we had another appointment with Dr. Dan. He began our second appointment by asking my son, “What did you think about our last meeting.”  My son said, “It was all good.  I also talked to my mom about what it meant when you asked me what types of tics I had.  I didn’t understand by what you meant by ‘types of tics.  We also talked about hypnosis.”

Description of a tic

The doctor asked my son, “What is your worst tic?”  My son said, “It is a yelling tic.” The doctor asked, “What happens when a tic starts?”   At first my son had a hard time describing it. I jumped into the discussion to help, and said to my son, “Think about where you are at when these tics start.” My son explained, I usually gets movement tics at the grocery store.”  The doctor then asked him what kinds of movements and my son showed him his jerking head tics.

My son explained to the doctor that there are so many people at the store and he felt like they were watching him. The doctor asked if the tics stop and if they do, how do they stop?   My son responded saying they just stop. The doctor asked if he was sure. He added, “Tell me what do you do when they start? What if you are not done shopping?” My son explained that sometimes he sits down on a bench at the store or he goes to the car. Then he does deep breathing to try to relax. The doctor exclaimed, “Well there is a lot that you are doing to make them stop.  You are removing yourself from the location, and your are doing deep breathing and trying to relax.”

He then said to my son that he knew that my son could not control the tics but did my son know what caused his tics.  My son couldn’t really answer.  The doctor turned to me and asked the same question.  I explained that when this first started I thought my son was doing it on purpose.  Later I realized it was tics, and it appears the tics are caused by stress.  The doctor responded that stress is a big word and has a big effect on many people.

The doctor went on to tell my son about one of his patients that had the same type of tic my son had except his yelling tic was so loud that when the boy had an appointment with the doctor other people in the building would come to his office to see if everything was all right. The doctor explained to my son that he ran into this boy’s mother at a local mall. The mother approached Dr. Dan and told him she wanted to update him on her son David. The woman said, “David is now 26 years old, has graduated from college and is married. He hasn’t had a yelling tic for over ten years.” The doctor then said to my son that we can make that happen with him too.


The doctor asked my son if he can go some place without physically moving. My son laughed and said no. The doctor said that he could, and he asked us to watch him do it. He closed his eyes and explained to us he was on the beach and his dog was sitting beside him.  He even reached out to pet the dog.  My son then understood that by imagining the beach the doctor could go there in his mind.

The doctor asked my son to participate in an experiment. He brought out a pad of paper and a pen. He asked my son to close his eyes and then write his name on the paper. After my son did this the doctor said keep your eyes closed and now write your name in cursive. Then he said my son could open his eyes. Looking at the piece of paper, my son had perfectly printed and wrote in cursive his first name.  The doctor asked how did you do that?  He continued, “Did you tell your hand that it should write the letters of your name, making them nicely spaced, and beginning your name with a capital letter?”  My son said, “No, I just imagined my name and then I wrote it.”  The doctor then said, “That is exactly what I am going to teach you to do which will help you with your tics, or taking shots or falling asleep at night.  He also asked my son how did he learn how to write his name so well.  My son said it was with practice.  The doctor explained that my son will need to practice in order to get the benefit from self-hypnosis.  The topic of practice came up several times during the discussion.

What is hypnosis

As I mentioned earlier my son and I had talked about this doctor being a specialist in hypnosis. Since my son brought up this discussion in the appointment Dr. Dan began talking about that topic.   A good portion of the appointment consisted of  talking about what hypnosis was. Dr. Dan first quizzed my son and asked him to describe what he knew about hypnosis. My son gave the typical Scooby Doo television description of hypnosis:

It’s like a trance.  A man takes a watch and swings it in front of the person, telling the person they are getting sleepy. The man then makes a suggestion that the hypnotized person do something, like squawk like a chicken. Soon the hypnotist snaps his fingers to wake up the guy. Everyone is laughing and the guy doesn’t understand what has just happened.

The doctor then told my son he was going to ask me what I knew about hypnosis, which he did.  I explained that of course I had seen hypnosis in cartoons, but I also participated in a hypnosis group in my college group.  Though I didn’t achieve what I wanted to achieve, I still used the relaxation techniques to this day.  During this description the doctor interrupted me at one point when I said that I did not accomplish what I wanted to with hypnosis.  He smiled and said, “Not yet.”

The doctor then turned to my son and asked if I had taught him those relaxing techniques.  My son said no, which really wasn’t true.  I had taught him visualization to get rid of hiccups.  When he was little we also used to breath and count when he had some of his seizures.  My son had also worked with a specialist who taught him biofeedback which used the deep breathing relaxing technique.  In fact my son tries to use that technique when we have to change his insulin inset, which is administered with a shot.  During this description the doctor interrupted me at one point when I said that I did not accomplish what I wanted to with hypnosis.  He smiled and said, “Not yet.”

The doctor explained that none of the TV depiction of hypnosis is true and that only you, yourself, can control your mind. He then went on a small tirade about the lack of ethics with these people who offer programs to stop smoking, losing weight, etc. or even worse, using the topic of hypnosis as a means of entertainment. He explained, hypnosis is a medical treatment and these people are practicing medicine without a license, which is against the law. He explained, that is why these people have a show for one day in a city and then they quickly leave town.  I could tell that this topic of giving the wrong impression about hypnosis really bothered this doctor.

As he was having this little tirade he was trying to get a TV ready to watch a VHS recording.  Soon his tirade of false impressions of hypnosis moved to a tirade about how the university doesn’t provide better equipment.  The TV was ancient.  The doctor wiggled all of the cords, and still the TV would not work.  He also said, “They won’t even pay to convert my videos to disc.  This is just another example of poor budgeting by our state government.”  As he continued to fiddle with the TV he mentioned that recently he got a phone call from a department in Washington D.C. asking him if the shut down of the state government, was impacting his access to his grant funds, which it wasn’t.

Demonstration by a previous patient

Soon the doctor came back to the task at hand and said that he was not going to waste our appointment time to deal with faulty equipment.  He said we will look at a different recording that he had on disc and could watch on his huge computer screen.  The DVD was a recording of a ten-year old girl explaining how hypnosis has affected her and how she does it.  She called it meditation rather than self-hypnosis.  She also explained what type of tics that she had, which ranged from a head turn to as extreme as coprolalia, which are swearing tics.  She called them bad word tics.  She demonstrated that as she relaxed, envisioning a nice place, she would then see a stop sign.  She said it was really “cool” because when she saw the stop sign her tics would stop.

Just three words:  3 and 6

At this point our appointment was getting close to the end.  The doctor wanted to give my son a tip for starting the process of self-hypnosis.  He said all you have to do is remember three words which are:  three and six.  He went on to explain that he wanted my son to practice breathing in deeply, through the nose, for at least three seconds, and then exhaling through the mouth for six seconds.  He demonstrated this and then asked my son what happens to the doctor’s shoulder when he does this.  My son said they go up when you breathed in and then they went down when you breathed out.  The doctor explained that as you continue doing the breathing exercise slowly the whole body would relax, all the way from the head to the toes.  Then to end our appointment he asked my son to practice this and he will see us at our next appointment.

A talent for children

Looking back at this appointment I realized why this doctor appeared to be good.  My son and I have been to many doctors, including pediatricians, neurologists and psychologist.  But none of them had the gift of talking to a child.  Yes, some of them changed their language and tone, but this doctor was different.  It was not just the style of the language but it was the progression of the topic.  He clearly lead my son through topics without my son realizing he was learning new things.  This doctor was really an expert at this.  He knew how to start down a topic, ease into it, get my son’s impression of it, and then provide the details of it, along with reinforcement.  As a result of this, the appointment was actually enjoyable.  The doctor even mentioned that my son was a very good listener, and remembered things that many people would not remember such as not using the words “trying” or “can’t.”  The way this doctor was working with my son was actually boosting my son’s self-esteem.  It was absolutely wonderful to watch.  I am looking forward to our next appointment in a couple of weeks.

To Be Continued . . .

This is a follow-up to my blog called Preparing fof the first long-term video EEG . . .  Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described the process of putting on the electrodes for a long-term video EEG.  We were situated in our room and now we had to wait.

At the beginning of our stay in the hospital for the long-term EEG my son had a smile on his face.  The technician was gone and he could be at ease.  We watched a video while a nurse took his vitals. My son also made his selections from the dinner menu.  The nurse gave me a tour of the area and explained how the couch folded into a cot.  The plan was for me to stay at the hospital with my son.  Eventually a neurologist, followed by an entourage of medical students, came and talked to us.  He explained that our goal was to capture some of these seizures on the EEG and the video.  My thought was, “No shit,”  as if we didn’t know why we were here.  I dislike it when a doctor acts like you are a two-year old when they explain something to you.  On the other hand they need to keep it less technical so a parent can understand.  I don’t think this doctor knew how to manage that balance.  My immediate instinct was caution; this is one I will have to watch.

Day one ended pretty quickly.  So far my son was doing fine.  There were a few times when he wanted to get off the bed and I had to coax him to stay.  At this hospital the patient had to be on the bed in order to be video taped.   In the evening my son had a really brief seizure which was facial focused with the eye tugging and blinking.  My husband left and said he would be back the next day.  So it was just me on my son… and the nurses.  Every three hours they came and checked my son’s blood pressure.  The only other momentous thing that happened that day is that they discontinued the Tegetrol.   The drug had caused some behavioral side affects and we planned to change medications.  Plus the hospital was the safest place to stop a medication.  Sometimes when you are decreasing the dosage of an anti epileptic drug it can invoke a seizure.  With some drugs you can’t just stop the drug.  Instead the body had to be slowly weaned off the medication.

It is sad to say, but in this case we wanted my son to have his seizures so that the doctors could evaluate them.  It is a very odd feeling.  As a parent, I was in “protect” mode, but was now faced with wishing my son would have a seizure.  It just isn’t natural for a parent to wish this.

The first big surprise was that they insisted that the lights be on in the room at all times.  All day, no problem.  All night.  What?  All night.  This was 2002 and this hospital’s cameras needed light in order to film my son.  There was no concern that my son’s sleep would be affected.  In fact they hoped it did affect him because at times sleep deprivation can trigger seizures.  Unfortunately it isn’t just the child that is affected.  So is the parent.  That night it was late before my son fell asleep.  He wanted to lay by me and I had to coax him to stay on the bed.  I pulled the cot close so that he could see me and he could hold my hand.  Finally he slept.

Throughout the night the nurses came in and tested his blood pressure and checked on him.  Sometimes he would wake up and sometimes he didn’t.  Finally we made it through the night.  I was exhausted.  My son, on the other hand, was starting to get fussy.  The environment wasn’t new any longer.  He didn’t care about their toys, and he was tired of the videos.  He desperately wanted off the bed and was irritated that he couldn’t and that this big pony-tail of wires was restricting his movement.

That morning I waited for his seizures to start. At home he usually had a round of seizures that started at about twenty minutes after he woke. This happened consistently, which made me so confident that we would capture the seizures on video and EEG. So I waited. And waited. My son had been awake for about an hour. Breakfast had come and he ate. Still no seizures. Another hour passed and still no seizures. In my mind I took note that this was odd.

After breakfast I helped my son wash up. Perhaps freshening him up would improve his mood. We played some games that the hospital had available. Soon lunch came and my son ate. Later in the afternoon he took a nap. Actually we both took a nap. We were exhausted.

Later that afternoon my son woke up. Soon after waking he had a small round of seizures. Sadly to say I was excited to see them happen. We also talked briefly with the neurologist on duty. He indicated that they would evaluate the event. He wanted us to remain in the hospital so that they could capture some more of these seizures. Plus they wanted to monitor my son since he was taken off of the Tegretol.

There is so much pent-up stress when your child is sick and the doctors can not correct the situation. Up to this event, I thought doctors were miracle workers, and in some cases they are. Unfortunately that was not the case for my son. It is this experience that showed me how little the medical community knew about the brain. It was also true that prescribing anti epileptic drugs was a trial and error circumstance; with epilepsy the patient was the guinea pig. This situation also showed me how important it is for a parent to advocate for their child.

We stayed two more days. My son had a few small seizures, still nothing like he had at home. At this point my son was cranky. He was tired of the environment, tired of the doctors and nurses, tired of being imprisoned by the bed. The electrodes were bothering him. He had started rubbing at them, especially behind his ears. The gauze wrapped around his head was making him hot and he wanted it off.  By day three the connectivity had reduced, even though the technicians repeatedly would come and add the pink gel with the blunt end of the syringe-like device.

Over the three days we had seen the same neurologist who was on duty that week. On the morning of the fourth day the neurologist came in and said that they would be discharging us. He said they had evaluated the test results and the events that we had captured were not seizures. After saying this he started walking out the door, acting very dismissive. I called out to him. “Wait a minute.” He stopped as I walked toward him and I asked “if they are not seizures, then what are they?” He turned to me and said “I don’t know,” and turned to leave.

Now I was angry. My emotions were raw. My son was not well and I wanted the doctor to help him. The last three days had drained me, both physically and mentally. I had thought if we could just get through this we would then have the answer and the doctors would know what to do.

The realization hit me that we had endured all of this for nothing. On top of it all I was facing a neurologist who was acting like he didn’t care. Was he just going to leave us hanging there? No diagnosis. No solutions. Nothing.

The doctor turned to leave and I grabbed his sleeve saying, “And now what? Hold on and listen to me. I don’t care that you have other patients to see.” With anger I continued, “I don’t care that you may have a child across the hall that may be dying. Listen to me. I don’t care. This is my son and he deserves the respect and attention just as much as any other child. We have a problem that needs to be addressed”. The doctor turned to me and said I should make a follow-up appointment with our regular neurologist. She can then determine the next steps.” And then he walked out.

You can imagine how I felt.  I was angry.  Very angry.  There was nothing that I could do at the moment.  So, I helped the technician take off the electrodes.  To do this they put a solution on my son’s head to get rid of the glue.  They slowly one by one removed the glued tape off the electrode.  Once they were all removed they washed his hair to get all of the glue out.  My son had tight curly hair and after I got him home I saw that he still had a lot of glue in his hair.  It was really hard to get out.  So finally we were free.  My husband picked us up and we went home.  My son was elated.

To Be Continued . . .

This is a follow-up to my blog called Enduring the first long-term EEG.  Read on if you want to know what life is like when your child is first diagnosed with epilepsy.  In my previous post I described my son’s first long-term video EEG. Enduring it was exhausting and we knew less about what was going on than before the EEG. I had also had my first run in with an insolent neurologist.

The next day after we got home from the long-term video EEG, I called the clinic to make an appointment with a neurologist. I had no faith in the neurologist we had been talking to in the beginning when this all started. There was no way we would be seeing the neurologist that we met while we were having the long-term EEG in the hospital. In fact I didn’t want him near my son ever again. If a doctor does not have compassion then they shouldn’t be a doctor, especially not a pediatric doctor.

It was a coincidence which neurologist we got an appointment with. As soon as we had met her, I knew she was good at her job. I could tell she cared and was determined to help my son. She also did not treat me like a stupid person. She understood my determination and marched in step with it.

The first thing she suggested is that we go to Cleveland Clinic and have another long-term video EEG there with a  specialist that she recommended.  So off we were to Cleveland Clinic and headed for another EEG.  I wasn’t sure if I liked this idea, but when your child is sick you will just about do anything to make them well.  It was hard to believe that we were going to have another EEG in just a two-week time frame.  Over the years I learned that neurologist always want to work with their own test results, especially when it came to EEG results. It didn’t take long to get an appointment at the this clinic, which our doctor arranged, and we were off the next day.  Lucky for us this clinic was about a three or four-hour drive from where we lived.

The big question that we needed answered was what type of disorder was this.  Was it epilepsy?  We knew his EEG indicated Benign Rolandic Epilepsy, but it did not explain the eye tugs and body jerks that happened throughout the day.  It also did not explain why he felt pain or why his hands had developed a tremor.  We wondered, is it tics?  It appeared to be very focal related and it included a blinking of the eyes. Or is there something wrong with his eyes?  Or what?

Upon reaching the clinic we immediately met the neurologist.  Once again we went through all of the questians and answers that we had already discussed with the emergency department, the first neurologist, several hospital EEG technicians, the hospital neurologist, and the last neurologist.  The typical questions that were asked included:

  • What was our family medical history?

My family has had cancer, diabetes, high blood pressure, and two of my fathers siblings had brain tumors. My husband had limited information since he was from West Africa. I knew his mother had asthma and we didn’t know what his dad died from. All of his brothers and their children were healthy.

  • Was there a family history of seizures?

Not that I was sure of. I had a cousin on my mother’s side who may have had seizures. I tried to get a hold of him, but he no longer lived in the United States and the family had lost track of him.

  • Was there a family history of other movement disorders?

No, not that we were aware of.

  • Besides getting tubes in his ears, did he have any other health problems?

A year or so earlier during a check up, they thought he had a heart murmur, but after testing it turned out to not be a problem

  • What was my pregnancy like?

We explained that my son was an IVF baby.  In vitro fertilization.  I was fourty years old and there was nothing unusual about the pregnancy itself.  He was born full term, which ended up in a C-section birth because he was a floater and failed to progress.

  • What was his development growth like? Did he reach all of the typical milestones, such as crawling, walking and talking? Was he breast-fed?

All was pretty normal. He crawled at the right age, but not for long, because he started walking at about 9 or 10 months old. The only thing that was a little unusual was that he never would drink from a bottle. I breast-fed him until he was almost 18 months. Yes, I know that was a long time, but we were both content with it. He was going to be my only baby and I wanted to relish every moment of him growing up. I loved the bond that we had as he nursed. There was such innocence and peacefulness and love. My mom teased me a lot about this, because he had gotten old enough to ask for it. Over those months I tried and tried to get him on a bottle with no success. At the time I didn’t know it, but this was one of the first indications of sensory processing integration issues.

  • What did the seizures look like?  Were there different kinds?  What was the frequency for each kind?  What was the duration for each kind?  Was he conscious during each type? Where was he when he had the seizures.  Etc., Etc.

These questions were very confusing for us. From our perspective at that time he had four types of seizures. His very first type of seizure included a complete stiffness of his body with arms reaching toward his face with a pulse-like movement. At the time he was at our computer on a chair, face turned upward. At the time he was not conscious and eventually stopped breathing. It is hard to tell how long it lasted. I had moved him to the couch and he was stuck in that mode for about five minutes. It then took him another five minutes before he started talking. Looking back, my memory of this is vivid with detail, but it is like it was all in slow motion. It is hard to explain. I clearly remember the look on his face, blank and scared. His hands were in a position as if he was reaching up to his eyes. No sounds came from him. It was nothing like the seizures that we all have classically seen on TV. No full body shakes. No drooling. Very different, but also very, very frightening.  Luckily he hand only had this type of seizure once, which was the first one he had ever had.

The second type of seizure usually happened within twenty minutes after waking up. It would start with a tug at his left eye followed by a blink with both eyes and a slight head jerk. You could feel the tug at the eye if you laid your hand on the side of his face. The muscle jerk had a different feeling than how the muscles feels when you blink an eye. Plus the eye blinking was not like his regular eye blinks. It was much faster. This trio of movements – eye tug, eye blinks and head jerk – at first started thirty to sixty seconds a part from each other. As time went by, the time between occurrences would increase going from seconds to minutes apart, to as long as much as five minutes apart. In duration this series of events could last up to twenty minutes. It was a long time.  Very scary, and I felt very helpless every time it happened. To make it even more disturbing, this didn’t happen just once a day. It happened repeatedly throughout the day. Ten to twenty times a day. Absolutely frightening.

The third type of seizure was very similar to the second type except the timing.  There was no time between the sets of events. Instead, his eyes would rapidly blink. The first time it happened he was in the kitchen and I was about four feet away from him. I noticed him as he tried to walk to me. His gait was not normal, more like forcing himself to walk, almost like he had forgotten how to walk, or like a stiff-legged Frankenstein. When I got to him he had collapsed in my arms. He could not talk. The eye movements were rapid, then pause, then rapid again. This went on for four or five times. It may have been going on longer because I did not see it when it started.  His hands were raised toward his face, as if he was trying to grab it, with his palms cupped. My heart raced and I just held onto him and kept talking to him, letting him know he was okay. I let him know I was with him and it was going to stop. Finally it was done and he just laid in my arms crying.  This type of seizure did not happen often.  Maybe monthly at the most.

The last type of seizure he had was very similar to the second time. It just didn’t have the duration. He would suddenly have an eye tug and an eye blink and it would stop. It was so brief that I don’t think he noticed it was happening and he kept playing. I noticed it because the eye tug and blink were unusual.

These descriptions are etched in my mind. First, because they were traumatic.  Secondly, over the years I have repeatedly described them to each doctor we have met, which have been many, for each EEG, whether it be a short-term EEG or a long-term video EEG, which has also been many. And last of all after he went to day care and eventually to school it was described to all of his teachers, school nurses, OT specialist, language specialist, ect. This happened every new school year. It was much easier in grade school. When he got to middle school it wasn’t just one teacher, but seven or so teachers and a few more specialists. It is exasperating.

This is one big reason I am totally behind getting medical records computerized. A parent is forced to provide these details over and over again. Each time, you worry if you left out something important. You don’t want to leave anything out because you have no idea what aspect of the events is critical information. So instead of spending your time supporting your child through the medical appointment, which he has grown to hate because he is afraid what they are going to do with them, you are left describing these events over and over again.

After gathering all of the information and reviewing some medical records that our other neurologist sent with us, we were admitted to the hospital associated with Cleveland Clinic for the long-term video EEG.

Our next step was to get all of the electrodes on.  This time my son knew what to expect and he was not happy about it.  The minute the technician brought out the glue bottle my son began to get upset.  I had to coax him to sit still and allow the technician to put the electrodes on. Camouflaging them by calling them buttons no longer worked. My son clearly knew what was about to happen. You could call them buttons and he still didn’t want to have anything to do with them.  There was a lot of wiggling, a lot of crying, and lot of begging from my son.  This technician was not as patient as our first one.  By the time he was adding the cream to the electrodes with the hyperdermic-looking tool my son was screaming.  He was really frightened. He begged to go home.  After a long three hours all of the electrodes were finally on and we had him situated on the bed in his room. Unfortunately he still wanted to go home, but he was a little happier because the technician was leaving him alone.

As we were getting set up in the hospital my husband was trying to find a room to stay. We tried to make arrangements with the local Ronald McDonald House, but they were full. He finally found a cheap, little dingy hotel near the hospital.  For myself, I was getting pretty good at sleeping at hospitals.  Thank goodness they provided a cot.  It was not very comfortable, but it did allow you to get some rest, at least enough to make it through the ordeal.

To Be Continued . . .

This is a follow-up to my blog post called Tourette Syndrome, in search for help . . .  Read on if you want to know what life is like when your child has Tourette Syndrome and you are desperate to find help.  In my previous post I described the doctors we had been working with and getting no positive results.  I also described this push by the school to get my son medicated.  I  talked about the medications we tried.  Finally I went on a search for a specialist that worked specifically with children that had Tourette Syndrome and who would look at the full picture of my son’s well-being.

As I said in the earlier post, I found a doctor pretty much by accident and we had to wait five months for our appointment.  Finally the appointment day arrived.  On the way to the appointment, my son was frustrated and didn’t want to go.  He was tired of doctors and he didn’t want to talk about his tics.  So we had a little fight as we drove to the doctor appointment.

Finally we arrive and get through the paperwork with the receptionist and then were escorted to a waiting room.  There were only two other people in the waiting room, a father and a son.  Soon, an elderly, short man entered the waiting room.  His hair was  gray and pulled back into a  pony tail.  Plus he had a gray, long beard.  A little like Dumbledore.   Immediately upon seeing him, I thought to myself, what an odd little character.  Suddenly he said my son’s name.  I was a little shocked.  This was our doctor.  This was Doctor D who was a specialist that we hoped would help us.  Definitely non-traditional.  Definitely not what we are used to in the stuffy world of neurologists.

Doctor D is the  Director of the Developmental-Behavioral Pediatrics Program and Clinical Director of the Developmental-Behavioral Pediatrics Clinic. In addition he is a Professor in the Department of Pediatrics and has a joint appointment as Professor in the Department of Family Practice & Community Health. He is Board Certified by the American Board of Pediatrics and by the American Board of Medical Hypnosis.

I later found out that his research interests include exploration of cyberphysiologic (self-regulatory) abilities in children and adolescents with headaches, Tourette Syndrome, children with sleep disorders, and in the ability of children to learn and use self-hypnosis to alter and regulate physiologic functions.  His bio said:

As an advocate for children and youth who live in families in communities I have an abiding faith in children’s ability to develop and cultivate skills in self-regulation and participate actively in their care toward promoting and maintaining optimum health. I believe in children and their families, and listen carefully to what children say and how they say it to best understand how I can help them and their family to help themselves. Most children and teens (and their parents) are pleasantly surprised to discover that they can learn self-regulation methods that can help them often dramatically with a wide variety of problems, from managing every day stress, to reducing/eliminating pain, to coping with repetitive procedures, managing fears and other forms of anxiety, eliminating habits.

Dr D led us to his large office, which was full of soft chairs and couches arranged comfortable and it didn’t feel clinical.  There was also a table full of 70s and 80s toy memorabilia.  The discussion immediately started with jokes from the doctor.  In fact the joking never stopped throughout our appointment.  He spent the hour talking directly with my son, with an attempt to have my son describe what was going on and to get comfortable talking to him.  Occasionally, he would turn to me for clarification or for confirmation.  One of the rules he told my son was, in our future appointments there were two words that were not allowed.  The words were try and can’t.  He told my son instead we would be using the word do.  Basically ‘Just Do It’, which he claimed was his slogan and Nike didn’t pay him a dime for it.  More humor.    Throughout the appointment he would test my son during the conversation to see if he would use those words.  Interestingly, my son caught himself every time just before he would have used one of those words.  The doctor commented that my son caught on quickly.

The majority of the conversation was the doctor asking my son questions about what kind of tics he had.  I was surprised to learn that my son had a hard time describing them.  Initially he said his whole body felt tight and that it hurt.  The doctor asked him what other ‘kinds’ of tics did he have.  My son responded questionably, “There are different kinds of tics?”  With a little reminder he started remember some of the movement tics he had and the vocal tics he had.

Toward the end of the appointment the doctor told my son that he could guarantee that he could reduce the number of tics my son was having and the intensity of the tics.  I was a surprised when he said this.  I don’t think I have ever heard a doctor use the word guarantee.  The doctor also asked if my son was anxious taking his shots for his insulin.  We described that my son had a real hard time changing his inset for his pump which was administered with a needle into the body.  The doctor said he could teach my son so that he will not even feel the needles. I addition the doctor talked about my son’s inability to fall asleep without taking melatonin.  He said he could teach my son to fall asleep and would no longer need the melatonin.

The appointment concluded with a confirmation that our next appointment was in two weeks and that the doctor would be showing my son and myself a video to explain what he was going to do.  And that was it.  That was our appointment with this new doctor who appeared to be an expert at hypnotism and teaching children self-hypnosis.  I was excited.  He recognized that my son was dealing with a lot of medical issues and that there is anxiety and stress associated with having these medical problems.  As we left the appointment heading to the car my son, with a smile on his face, said, “He is a really good doctor.  I really like him.  He is a hippy.  Kind of like you.”  I laughed and couldn’t wait for our next appointment.  We were headed for a new adventure.

To Be Continued . . .

You may already know that I have a son who has several medical issues including Tourette Syndrome.  For the last four years we have sought some relief from the tics which have become more extreme over time.  Up to today we were working with our pediatrician, my son’s neurologist who takes care of his epilepsy, a clinic that uses non-traditional methods, and a neuropsychologist.

The neurologist hasn’t been convinced that all of the events my son has been having are tics.  There is some suspicion that they may be non epileptic seizures, or a combination of both tics and non epileptic seizures.  In pursuit of gaining some relief from these events,  he referred us to a neuropsychologist.  In addition he prescribed, at one time or another,  antihypertensive medications, which are medications whose original purpose is for treating high blood pressure.  The medications we tried included Clonidine (aka Catapres) and Tenex (aka Guanfacine).  Unfortunately the side effects can include sedation, dry mouth, fatigue, headaches and dizziness.  The sedation affect wiped out my son and we discontinued using them.

The non-traditional clinic we saw, which was a part of Children’s Hospital, worked with my son to learn bio feedback.  My son became really good at this.  Unfortunately it didn’t work well with his tics because he needed to do it before the tics started.  Once he is caught in a round of tics he can’t concentrate enough to do the bio feedback.  The key is to identify triggers and hopefully try the bio feedback when a trigger is recognized.  We still try to use this method today, not only for TS, but also when he has to take shots for his diabetes.  It is a great way to just calm down.

This non-traditional clinic also had a psychiatrist that specialized in vitamins, minerals and supplements.  At one time he recommended that my son take:

Omega 3 Fatty Acids
Multi vitamin
Vitamin D

We did this regime of supplements for about six months.  Initially I thought it was working.  We actually had two weeks where my son had no tics. We had not experienced this since the tics had started.  Unfortunately this happened just before another school year started.  Once school started the tics came back with full force.

We continued to work with the neuropsychologist.  She was focusing on:

    • Identifying triggers for tics
    • Identifying tools to use when having tics
    • Tools to prevent bouts of tics
    • Addressing his anxiety
    • Addressing his sensory food issues
It is now four years since the tics started and we really haven’t found any answers.  I believe my son has learned how to identify some of the triggers and tries to minimize their effect.  He has also started eating different foods, which is a huge accomplishment.  I think he would be able to deal with his tics better if he didn’t have to deal with other people and their reaction to the tics, especially in the school setting. School is stressful enough for him, but when he has peers making fun of him, or dealing with adults who are ignorant about Tourette Syndrome, it makes it even more stressful.  This last school year my son missed a lot of school.  The combination of his tics, diabetes and epilepsy was a lose, lose situation.  Due to all of these absences I went on a search for a new specialist for the Tourette Syndrome.  Meanwhile the neuropsychologist suggested that we try medications again and was recommending an anxiety medication, even though we tried this in the past with no positive effect.

Meanwhile the school is pressing me to identify something which would change the circumstances at school.  They acted like I had a miracle cure up my sleeve and refused to recognize they were the main reason his TS was worse.  So, against my judgement, I put my son on the anxiety medication.  It took me about a week to get a hold of my senses and I took him off again.  There was also a period of time where the school nurse was pushing me to get some type of medication that would take the edge off these long bouts of tics that my son had.  She kept sending me names of neurologists, none with any specific expertise, just names.  She acted as if we hadn’t already seen doctor after doctor.  I also have learned that you just don’t pick names out of a hat.  Finding the right doctor is not easy.  Once again, against my instinct, we went to a pediatrician and she prescribed Valium.  I came to my senses pretty quickly on this one and never used them.

As a note of explanation, I am not against these medications.  There are times and people where these medications are not only effective, but necessary.  In regard to my son, in the last nine years he has been on numerous medications for his epilepsy.  Scary medications.  From this experience, I learned that getting the right medication is pretty much a trial and error type of process.  My son was already on a medication for his epilepsy that is also used for anxiety.  It was a benzodiazepine, which works by decreasing abnormal electrical activity in the brain.  Since there were questions about what these events were, I just didn’t want to haphazardly add another anxiety medication on top of the medications he was already on.

It is so frustrating to have an educational system trying to push you toward a medical solution that may not be the best for your child.  I finally wrote a letter to the superintendent, principal, nurse and his teacher that we needed to find a different approach here.  Drugging my son was not the answer.  There are some things we need to accept.  The TS is here and we need to deal with it as it is.  I don’t have any miracles to make it go away.  In addition, it is a fact that with all of the health problems my son has he is going to miss school.  We needed to expect it and plan for it.  It was my intent to push them into a new approach in educating my son, perhaps even supplying a tutor to keep him on track with his class.  Guess what.  No one responded to my letter.  Finally at the end of the school year his teacher emailed and said she would set up a meeting before the end of the year.  I didn’t here from her again.  At that point I just wanted to get through the end of school.  I would deal with the school before school started again.

Earlier in the year I had started looking for a new doctor that may have some expertise and offer a different direction to deal with the tics.  I also wanted someone who would look at the whole picture.  A doctor  said to me when my son was diagnosed with Type 1 Diabetes that it seems to be all related and is probably an autoimmune problem.  Keep in mind my son was dealing with epilepsy, Tourette Syndrome, (possibly nonepileptic seizures), Diabetes, an anxiety disorder, a little OCD, a little Aspergers, a little ADD,  and learning disabilities.  That is quite a bit for a 12-year-old boy.  I am very proud of him for dealing with it all.  I am not so sure I could do the same.  Up to now each of these medical issues were being addressed independently.

Anyway, I went on a hunt.  Thank goodness for the internet.  I noticed that if we were located on the east coast there would be more of a selection of doctors.  Even though we were near a large city, Minneapolis – St. Paul, there still did not seem to be any experts.  So I just started calling hospitals and clinics and requested recommendations.  Initially they weren’t much help.  After reaching out to 30 or more medical centers I called the University of Minnesota Hospital, and they suggested a doctor.  After contacting his office, I found that he had a waiting list and it would be five months before we could see him.  That in itself meant something to me.  It was obvious that people were seeing him.  It was either because there just weren’t that many specialists or he was really good.  I decided we would wait and we would find out.

Finally the five months passed by and it was the day for our appointment.

To be continued . . .