Posts Tagged ‘ADHD’

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
B-Complex
Probiotics
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 . . .

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I have had the opportunity to meet several people, via Twitter and Facebook, whose lives have been touched by Tourette Syndrome (TS).  In my case, my son was diagnosed three years ago and is now in 6th grade.  It has been a long, tough three years with no real resolution yet.  Each day TS reminds him that it is still present, whether it be a jerk of a limb or sound from his mouth.  Each day he deals with the partners that go along with TS, including obsessive compulsive disorder and attention deficit disorder.  Each day he goes to school and faces the fact that learning is a little bit harder for him.  Each day he faces his fellow classmates and prays that no one notices his tics.  Each day he, at one time or another, tries to hold the tics inside with minimal success.

Take a moment to meet some of these great people on Twitter who frequently deal with the world of TS:   @nicoledimas, @mylesrwalker, @phoebewonderlan, @JaysChallenge@teensWts, @LisaAnnSings, @soc378, @PAdEntremont, @Tourettes_Mum, @touretteshero, @Robinae24, @swissvalley, @iTube4Tourettes, @themoxiemomma

Also take a look at this video.  It is from @goldylookfleece and it will tell you a little more about TS.  Not only is the information very helpful but the photographs and music are really well done.

 

 

My son has a number of different health issues and learning disabilities. His kindergarten teacher after about four months recommended that we get an IEP in place for him. Unfortunately our family had to relocate to a new state. It also meant my son would have to leave his school in Ohio, go to school with my sister’s children for a few weeks as we were finding a place to live, and then eventually enroll in his new school (HES).

Once we were registered at HES, I met with the principal, the nurse, and my son’s kindergarten teacher for the purpose of explaining what type of support my son needed as a result of his health issues, which at that time included epilepsy and tremors. I also informed them that the Ohio school was in the process of getting the IEP set up. HES said they would evaluate the situation and get back with me.

Meanwhile I was looking for a new neurologist to work with my son.  His seizures were not controlled yet. The harder seizures stopped when a vagal nerve stimulator (VNS) was implanted. Yet, he was still having many seizures throughout the day. We had tried numerous anti-epileptic drugs and had no positive success. When we relocated to this area, we were close to Mayo Clinic where we had a referral from my son’s Ohio neurologist. We tried working with Mayo for about six months. I soon learned they did not have a clue what to do. They kept looking for a typical case, which would have a typical treatment plan.  My son’s condition was far from typical.  So I went on a search again, and found a neurologist that specialized in pediatric epilepsy that practiced near us. It took him about eight months to find the right combination of medications to reduce the number of seizures. He also had my son referred to a neuropsychologist who ran tests on my son to determine if there were learning disabilities or other comorbid conditions such as ADHD or Autism.

By this time my son was in first grade. In first grade his teacher had a baby and as a result of this situation part of the year was covered by a substitute teacher (looking back this was the beginning of issues with school). In first grade they finally got him on an IEP and it indicated they would provide special help with reading, language, and OT for his tremors. At the end of second grade his teacher told me that by the end of the year my son was starting to struggle with math, and she suggested that I get this addressed in his IEP.

About the same time we received the test results from the neuropsychologist. There really wasn’t anything unexpected there. They indicated he was above average on the intelligence test. There were signs of reading difficulties, characteristics of anxiety and attention issues. The area he did the best in was abstract problem solving. Along with the results of the tests, the neuropsychologist provided me with specific information about what my son would need to support him in school, both from a medical perspective and an educational perspective. This document was a real blessing because it took the control out of the school’s hands. Besides being supported for reading, they indicated he would need help in math, and his tremors were drastically affecting his ability to physically write, which in turn was affecting his ability to compose a report or do written communication. They recommended that alternative tools be used for writing. They suggested that we start teaching my son how to type as soon as possible or use a voice recognition software. They also recommended that any school work sheets that were used in his class needed to be adjusted so that all writing areas were magnified. And finally he should be given special assistance for any type of testing that was done, including help with reading, writing, a quiet environment and an extended time frame.

I used the neuropsychologist report for everything my son needed.  I took the assessment out of the hands of the school, and I had very specific instructions that were necessary for my son to succeed in school.  I soon learned that the school system was very good at going through the motions to make it appear they were doing what they were supposed to do.  The key word here is “appear.” 

As an example, the recommendation regarding learning some alternative tools to compose written communications occurred when he was in second grade.  By the time my son left this school after fifth grade, he had not received any extra teaching for keyboarding.  Each year all of  the students would have a 2 or 3 week course in the media center for key boarding.  In reality my son needed more than 90 minutes a week for 2 or 3 weeks.  The school also appeared to pursue a voice recognition software.  They kept saying it wasn’t working because my son’s voice was affected by his VNS every five minutes and they couldn’t get the software trained to properly work.  Plus they said they could not teach my son how to edit his work using the voice recognition software.  After a year and a half of these excuses I bought my own personal copy of the software.  Within one weekend I had my son dictating a report and editing it.  It wasn’t perfect, but it was communication, and it was far better than writing words on paper that my son, or anybody else, could not read.  It also gave him the experience of composing a sentence, and building it into a paragraph, which he had not every experienced before.

Over the summer I hired my son’s second grade teacher to tutor him in reading and comprehension.  We also saw an occupational therapist to work with his fine motor skills and to address some sensory integration issues that had been diagnosed.

Finally my son had reached the third grade which was a major turning point in my son’s education. His issues with reading and writing had progressively gotten worse.  He was about a year behind in reading.  He also was still not able to physically write.  And then a new health issue appeared, which sent us down a path that I have been finding it hard to diverge from.

to be continued . . .

In earlier posts or from tweets on Twitter you may have already surmised that my son has Tourette Syndrome and some of the comorbid conditions that can go with it, such as OCD and ADHD.  Below is some basic information about Tourette Syndrome and a description of our experience with it.

Tourette syndrome (TS) is a neurological disorder which presents itself with repetitive, involuntary movements and vocalizations called both of which are called tics.  It is estimated that 200,000 Americans have the most severe form of TS.  As many as one in 100 exhibit milder and less complex symptoms such as simple motor tics or vocal tics.  TS usually begins in childhood. 

The first signs of Tourette Syndrome with my son was 3 1/2 years ago when he was in third grade.  Initially, I did not recognize the symptoms.  His first tics consisted of a sniffing type of tic.  When this first started, silly as it sounds, I thought he had forgotten how to breathe through his nose .  It scared me because he was not breathing right, and I did not understand what was going on.

 

Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a small number of muscles. Some of the common simple tics include eye blinking,  facial grimacing, shoulder shrugging, and head or shoulder jerking.  Simple vocal tics can include repetitive throat-clearing, sniffing, or grunting sounds.

Complex tics are distinct, patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug. Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting.  Complex vocal tics include words or phrases.  Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering swear words) or echolalia (repeating the words or phrases of others).

With my son the sniffing tic went on for about two months.  Then his tic changed to a vocal humming tic.  I still did not understand what was going on and I actually criticized him for doing the humming.  On his birthday, we went to a movie which he had been looking forward to for a long time,  and afterwards we stopped at a department store to buy the video game.  He was very, very excited.  As we were looking at the video games, his humming tic change to the sniffing tic.  It was at that moment that I recognized the symptoms of Tourette Syndrome.  His tic had changed right before my eyes.  I felt really guilty and was really sorry that I had criticised him for something he could not control. 

Within about six months his tics became more severe and shifted from simple tics to more complex tics.  His tics consisted of erratic body jerks  and yells that sounded like a yell of pain.  There were nights when this went on and on for three hours. 

I worked with both a neurologist and a neuropsychologist to evaluate what was happening and to identify a plan to address the situation.  They surmised that the events were being triggered by anxiety.  We arranged for my son to work with a therapist to learn how to deal with the anxiety.  We also created an education plan that  included a list of requirements needed for my son to be able to return to school, which included a detailed explanation of what Tourette Syndrome is, and how to respond to it.

I was really concerned that he was missing so much school and he was falling further and further behind.  When all of this escalated we kept him home because on some days he got very little sleep, or his events kept going on and on throughout the day.  In third grade he was in a standard classroom.  In addition he was getting some Occupational Therapy to help with some of his motor issues and tremors.  He also  saw a language/ reading specialist.  My biggest concern for him when he went back to school was:  his ability to walk and not fall down, the reaction from others about the yelling vocalizations, the safety of him holding objects, such as a pencil, and having some privacy when the events occurred.

He had been out of school for about two to three weeks when the school started escalating their concern about him missing school.  So, I brought him to school, led him to his classroom.  I wanted to hang around a bit to see how they handled the situation.  While waiting, I met with the principal.  From our discussion, it was obvious they had no idea what was going on and how severe the situation had become. 

The principal asked me what we needed to do to get my son back in school.  I told the principal that they were not prepared for my son to be in school.  I think he was caught off guard by this statement.  I told him that I had recommendations from  the neurologist and neuropsychologist.  For the purpose of getting him to understand the severity of the situation and come to the same conclusions that the specialist had, I started asking him questions.  I said, “These events can go on for two to three hours at a time and really drain my son’s energy.  What are you going to do to help this during a school day?”  He suggested my son should come to school with a  a reduced schedule, and slowly increase it over time.  In addition he offered the use of a tutor to help catch up with school.

I then asked, “What are you going to do if he has a round of these tics and falls down or pokes himself with a pencil?”  The principal said we could get an aid to watch him, and to also encourage him to get back with the flow of the class.  I asked, “What are you going to do if these tics go on and on?  There is no way he can sit in a desk while this is happening.  Having these events in a public place could also increase anxiety and the cycle of tics may not stop.  He really needs a safe, private area where he could go when the tics got bad.”  The principal said we could put up a small divider area in the classroom along with a bean bag chair.  I suggested that we get a bean bag that truly would provide some protection and not be one of their current worn out ragged bean bags.  Initially he said he didn’t have anything different.  I then offered to provide it.

While we were talking the teacher came with my son who was in the process of having a round of these complex tics.  I told the principal that I was taking my son home for the day, and we would return when he had everything set up.

to be continued . . .