Archive for the ‘Tourrette’ Category

Our Boys

    

       Our oldest son Blake suffered from Congestive Heart Failure at 12 days old. Cooper, our middle son, underwent reparative stomach/esophageal surgery at 8 weeks of age and our youngest son Gavin was rushed to the Intensive Care Unit at Children’s Mercy Hospital on the very same day he was born with a collapsed lung (tension pneumo-thorax). The first few moments of each of our children’s lives were filled with uncertain calamities which were accompanied by large creeping black shadows of doubt as to whether or not each of them would survive. Gavin has been cleared by the doctors with a clean bill of health; however, his curiosity has come close to ending this streak on several occasions. Cooper is still attempting to master simple sounds of the English language as a five-year old, repeatedly butchering even his own name when responding to requests for an introduction.

“What’s your name?” A stranger inquires.

An innate innocence and eagerness to share beams from Cooper’s eyes as they grow larger and he smiles; He unashamedly mispronounces his name, “Pooper, my name is Pooper”. 

That Would Be Doctor Pooper To You...

You cannot help but laugh or at least chuckle before trying to correct him. The stranger looked at us as if this was some kind of deviant attempt by our son to engross them. We hustled to correct our speech impaired son, ‘Cooper, his name is Cooper”, I replied to the stranger with a smirk. And then there is our oldest son, Blake…our precious Blake.

          Blake was born on a hot July day in 2002. Twelve days after Blake was born, he was in Congestive Heart Failure, desperately needing a life saving surgery to correct a congenital heart defect. Blake was always ahead of the learning curve as a young child. He is extremely smart and inquisitive about most matters pertaining to life and his environment. He mastered walking; OK, maybe not mastered, but he took his first staggering steps at eight months old and quickly progressed on to walking and running soon after that. He was leaps and bounds ahead of most milestones including everything from talking, social skills and identifying concrete objects among a host of other criteria that is frequently used to gauge children’s developmental progress. He was a dreamer at an early age and quickly mastered yet another art, storytelling. He endlessly and darn near effortlessly went on and on and on and on…and on….and on, OK, I think you get my point…and on for countless minutes with imaginative stories that stretched far beyond the realm of reality. He mastered body parts, both the laymen names and their respective medical terminologies as well. He perfected his association with colors, shapes, letters and numerous numbers long before pre-school. Preschool came along and Blake seemed to surf through the curriculum with little effort. He possessed an unexplainable endurance for learning and knowledge.

Classic Blake!!!

  Blake encroached upon his first day of REAL school…Kindergarten. He performed very well at school, but was quickly identified as having issues maintaining his buttocks on the flat surface known otherwise as his seat. His teachers in both Kindergarten and first grade loved him. He was a special kid to them who had a huge personality attached to this likeable little character of his. As Blake progressed on to second and then third grade, he continued to struggle with staying in his seat while most of his fellow students conquered this menial task with relative ease. Our son’s second grade teacher recognized that while Blake was definitely not one to sit or stand still, he was excelling at the curriculum. The teacher suggested that maybe some of Blake’s inattention was possibly related to boredom with his class work. She recommended that we allow Blake to take a test for gifted children. There was an initial period of hesitation for us and several follow-up discussions which took place between Blake, my wife and I as well as members of the school staff. We decided to let Blake take the Wechsler’s Intelligence Test and his overall score was remarkable. The test was similar in nature to what I took in elementary school, but my focus was a little less stellar than what Blake’s was. I unknowingly created contemporary designs and large letters with the bubble-populated score sheet thus ruining any opportunity I had of being in a gifted program. I wanted to make sure that what we were doing and the decision we would ultimately make, had everything to do with Blake and nothing to do with my past desires to be a part of the gifted program. Intelligence is a great characteristic to have, but it is only favorable to the individual if they have the capacity to apply it to their everyday cognitive processes.  

Look At Those Cheeks!

          Sometime during Blake’s second grade year, we began noticing what sounded like a snort, yes a snort, kind of like the noise a pig would make, only reverberated. We questioned Blake repeatedly if he was alright and if his nose or throat was bothering him, to which he nonchalantly replied, “Sure”, “I guess” or “ I’m fine”. These are your typical run of the mill generic responses from the mind of a seven and eight year old child, but these half-hearted lackluster attempts at communicating didn’t provide us with any real insight as to what was going on in that little head of his. I mean, who knows, this unknowingly could have been some mysterious subconscious cry out for attention, but there was definitely more to it than that. My wife and I initially presumed that he had some sort of allergic reaction and wrote the whole thing off for a while. About six months later, we noticed something different, something very unusual to us; Blake began involuntary eye-blinking. At first these eye-blinks consisted of rapid-firing impulses, impulses that began overpowering Blake’s ability to control his own actions. Over the course of time, the eye-blinks slowed down a bit, but these involuntary movements increased with intensity. He would blink…his eyes stayed closed with a great force for several seconds and then released, only to repeat this process for however long that particular episode lasted. These motor tics, by themselves, are sometimes part of the developmental process for many children as their brains are rapidly developing and these types of involuntary movements are often considered transient and temporal, but this was just the beginning for Blake.

          Blake wasn’t personally struggling with his tics at this point in time, but we were starting to grow concerned. I honestly believe that for the most part, Blake had no idea these tics were even happening or if he did, there was no reason for him to believe this was considered abnormal. We weren’t exactly sure how Blake’s peers would respond or if his teachers would give him a fair shake in class with the presence of these involuntary movements and sounds, especially if they weren’t aware of his situation. Our minds steadily progressed like a freight train moving onto future scenarios and situations while we attempted to sift through this emotional chaos. I mean…Really? After everything else we had been through? One of our biggest challenges, among many we set on our shoulders, was how we were going to react to people in everyday life situations. You know…the kind that point and stare, make subtle comments under their breath or give you “the look” as if you need to control your child, all without saying a single word. We were guilty as charged for jumping the gun here, but then again, Can you blame us?

          Blake’s next tic secured his diagnosis. He was experiencing several motor tics, but for Tourette’s Syndrome to be diagnosed, the motor tics had to be accompanied with at least one verbal tic. Sure enough, this outward vocal expression forced him to meet the listed criteria for diagnosis and also led him down a path toward more aggressive tics. This verbal tic came in the form of throat clearing. We mistakenly thought at first that this was one of Blake’s cute attempts at getting attention, but the tic persisted and even more so when he tried to control it. These tics were followed by numerous other tics which came and went. Some of these involuntary movements include(d), but were/are not limited to; Lip biting, putting things in his mouth, head jerks, shoulder shrugs, nose twitches, throat clearing, snorting, eye blinks (rapid fire and intense) among several others.

PLEASE WATCH THE FOLLOWING VIDEO:

http://www.youtube.com/watch?v=qjWdnQZGScs&feature=player_detailpage

          Heather and I were growing very concerned about Blake’s present and future ability to adapt as the condition and his symptoms steadily progressed. We contemplated having a meeting with his teachers and fellow students to explain what was going on in Blake’s brain, but for the time being, we only communicated this with his teachers and other youth leaders.  Blake was taking this whole thing rather well. He even pretended to acquire some new, far-fetched tics to his mother and I, and then the punch line followed, “HAHA! I gotcha”. His ability to adapt in many different circumstances has been amazing, but he would experience the effects of Tourette’s Syndrome so severe that not even Blake would be able to adapt this time.

     We decided to go out for a quick dinner, something to try and appease the kids, but quick and easy at the same time. So there we were, on our way to something quick, something fast and something fun and that meant PIZZA!!! We decided to make our way to the local pizza buffet for an all-you-can-eat episode with the Harris Family. Blake’s tics were flaring with great frequency, coupled with a hand-in-hand intensity like we had never seen before. We drew nearer and nearer to our destination, hoping that a fun family outing would ease this onslaught of involuntary motions. Boy, were we wrong. Blake’s tics began shooting off in a rapid-fire format, almost extending beyond the capabilities of his physiological processes. He experienced physical pain due to not being able to control his own body. His eyes were dry and itchy, his throat hurt and I’m sure his nose was on the brink of bringing a bloody mess, but the more he tried to stop, the more the tics intensified. This isn’t a correlation that’s easy for a seven-year old to put together, especially when your body has a mind of its own.

I Got It Dad!!!

          Blake was growing weary, but he was still moderately excited to scarf down some pizza; however, this excitement was hi-jacked somewhere along the seven-mile drive from our house to the pizza joint. There was a brief moment when the tics subsided, but this momentary lapse in the electrical misfiring of his synapses allowed Blake to ask us an unprecedented question;

“Can we just go home?”, as tears welled up in his eyes.

I responded, “We can Blake, but can we at least try to eat something”.

We should have listened to him, because we hadn’t seen the likes of what was yet to come. Blake agreed to try and muster through it as we pulled into the parking lot and made our way through the front door. We paid for our meal and in the midst of other pizza patrons, we stacked our favorite pizza slices onto our plates. With a plateful of pizza and growling stomachs, we sat down and began eating our first of who knows how many slices from the buffet line. And then it started. Blake’s tics started back up with a couple of nasal clearings and then a head jerk.

Head jerk…nasal clearing (x3)…head jerk…eye blinks…nasal clearing (x3)…head jerk…head jerk…

He couldn’t even lift the pizza to his mouth, much less eat it. He placed both hands up to his face as he tried to physically overpower these movements, but with more resistance, the movements increased in frequency and intensity. He contorted his face in multiple directions using the force of his hands, but no matter how valiantly he tried, he failed each and every time. He threw his pizza onto the plate which lay motionless before him and started crying. In an effort to make Blake feel more comfortable and respected, we decided to leave without finishing our meal.

How's My Cheese?

We took our frustrations to the internet and began a feverish search, looking for journal studies that might touch on and/or provide insight into Blake’s condition. Several studies alluded to a possible deficiency of certain organic elements within the brain so we began a quest to try and treat this syndrome with supplements. This method of treatment proved to be fruitless as his tics did not improve or worsen while he was on the supplements. As parents, we do not like to medicate our children, but at some point, quality of life becomes an issue. You have to do something to see that your child will have a fair shot at the simple things in life. We turned our efforts towards the medical field and made an appointment with neurology. Due to the complex nature of Tourette’s Syndrome and the still mysterious pathology that may or may not cause it, the only known treatments available are medicinal in nature. This was not our first choice of treatment, but by this point, we felt it was our only one…it was Blake’s only one. These frustrations brought us to the realization that we could not be a part of Blake’s negative attention. He had to feel safe at home. He had to feel welcome and wanted at the one place where he is supposed to feel unconditionally loved…and this is the one place he HAD to feel loved. We had to come to another realization as well. There isn’t a so-called normal anymore; of course, there never really was a normal for us, but this was and is Blake’s normal. It does not mean there was/is something wrong with him; it just means there is something different about him.

Blake

          We reluctantly made our appointment with neurology and the doctor immediately diagnosed Blake with Tourrette’s Syndrome. The doctor provided us with blanket of comfort and absolute assurance as he also had a child with Tourette’s, a sixteen year old son to be exact. He was an Irish man, with an over-bearing Irish accent, as if he had just recently left his native Ireland. He carried an old leather bag like the doctors used to carry many years ago. It was black and worn with a small brass plate on the side of it which displayed his initials. He quickly garnered our trust and we administered the prescribed medication after having it cleared with Blake’s cardiologist. We were very fortunate in that the medication worked really well for Blake. It did not alleviate his tics altogether, but it did reduce them to a point where he can function normally…or at least what we consider to be within a normal range of functionality. The smallest dose worked which spared us from having to try a seemingly endless barrage of dosage combinations and medications while each time potentially hoping for a favorable outcome.

          The only time we really notice Blake’s tics now is when we forget to give him his medication or for whatever reason, every once in a while his tics overpower the controlling range of the medication, but this does not happen very often. Blake’s tics flare out of control under some fairly consistent conditions; Tired, when he is frustrated, over-excitement and even more so during the school year. If it could be summed up into one general state, the tics are induced by some level of stress, good and bad.  One of our biggest concerns now is the co-morbidity rate which follows Tourette’s Syndrome and involves behavioral conditions such as; Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), Oppositional Defiant Disorder (ODD), Obsessive Compulsive Disorder (OCD) and other mental disorders. This rate hovers right around the 60 percent mark, but I will save this discussion for another post. 

          My little bit of advice, regardless of what might be influencing your child’s behavior, is acceptance. We live in a world where we are taught there is something wrong with the short bus. My generation has grown up making fun of kids who are different, whether that means retarded, deaf, dumb or blind, the epileptics, the wheelchair bound, the special education children, among a host of other diseases/disorders which affect a child’s ability to learn and interact. THERE IS NOTHING WRONG WITH YOUR CHILD!!! PEOPLE!!! THERE IS NOTHING WRONG WITH THESE CHILDREN!!! Sure, they might be different, but there is absolutely, positively, nothing wrong with different. The Bible says we are all children of God. I heard this next line at a leadership seminar and I cannot remember who said it, but I wanted to share it with you. Again…the bible says we are all children of God. We are ALL created in the image of God. Not one…Not some, but ALL. This means there is no hierarchy based on physicality or intellectuality, but that the basic foundation and fundamental being of each individual person is collectively created in the image of God. Not one…Not some, but ALL.

Blake at 8 Almost 9 Years Old