Tuesday, May 22, 2012

Not Your Typical Child Tuesday #7

Again, to all of you that follow my FB page, thanks for being so supportive and hanging on while my family went through this stressful time. It's not over yet but, at least we have respite for a couple of months! Anyway, I can't think of better way to kick back into blog mode than another "Not Your Typical Child Tuesday"! :)

If you couldn't guess by last weeks post, I am going to talk about Tourette Syndrome today. If you think you know all about it and it's not in your life, then you don't know a thing! For example, the stereotypical misconception of TS is that you have coprolalia (yelling curse words) is actually rare in people with TS and that the percentage of people with coprolalia is something like LESS than 10%?! Did you also know that even though when TV shows or news shows mention TS, we typically think of adults but, that a majority of people with TS are children?!

Tourette Syndrome affects something between 1 and 10 students per 1000. Which sounds like pretty good odds your child or family won't have it but, since my son has been diagnosed, I actually see a lot of people that I can honestly say would fit the diagnostic criteria for having TS and they don't know they have it! TS can be so mild that a varying amount of adults have had it a majority of their life and not know it nor have their 'tics' get fully noticed by family or the public or they get misdiagnosed even. In fact, most females with TS will often get diagnosed with OCD!

TS affects boys 3x more often than girls and is prevalent in the Caucasian population versus any other. There are some genetic components as well in developing TS. It has been known to run in families but, a lot of the time, it appears for no reason. There are certain familial traits that often seem to be present in families though that many a researcher finds interesting when TS finally manifests. For example, OCD is hugely prevalent in families of a child with TS. Though again, it's not always that way but, a large enough number of things like this seem to happen and it has caught researchers' attention. Another main focus is the dopamine and serotonin levels and receptors in the brain. The theories go that either the receptors are hypersensitive or that the person with TS over or under produces those chemicals in the brain. They have even found that mutations involving the SLITRK1 gene have been identified in a small number of people with Tourette syndrome. SLITRK is responsible for providing instructions for making a protein that is active in the brain. They believe that the SLITRK1 protein might plays a role in the development of nerve cells, including the growth of specialized extensions (axons and dendrites) that allow each nerve cell to communicate with nearby cells. It is unclear how mutations in the SLITRK1 gene can lead to this disorder.

So, what do we take from this? TS is a neurobiological disorder that usually presents with tics. Tics being involuntary, rapid, repetitive movements or vocal outburts. Tics will wax and wane but, be present for at least one year. Tics often change and go away or change and reappear. For example, they may have a blinking tic that stays with them and a sniffing tic that changes to a humming, etc. Some tics reappear intermittently and others may only appear once. There is no rhyme or reason for it. Tics vary from person to person in severity and duration. Some kids may have days, weeks or months with no outright noticeable tics, while others will never have a tic free day. Some kiddos may have severe enough TS on an upswing that they cannot walk, talk, or eat normal! For some other kiddos that severity of tics may be an everyday thing!

Children with TS typically have a normal range of IQs, meaning just like the normal nuero-typical children, they have a normal intelligence and some have high IQs. They are in every way as normal as your son, your daughter or you neighbor's children. They may have other issues though, called comorbid disorders, like ADHD, OCD, Sensory Processing Disorder, ODD, Asperger's, etc. It is these accompanying disorders that often times gives the child some trouble, be it with school, attention, behavior, etc. To make matters worse, children and adults with TS often times have episodes we as parents typically call rages. These are never pleasant for anyone involved. They often times on an upswing or if their TS is severe, are exhausted by their constant body motion and it's painful. As a parent, there is nothing more painful than to watch on in helplessness.

There is so much more to say on TS but, I will save it for another post! :)

Thanks again for joining me for another Not Your Typical Child Tuesday and thanks again for hanging with me while we went through this difficult time in our family. Your support was seriously amazing!




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