Advocacy and awareness: Necessities and parts of daily life, part 2

This is the continuation from my post yesterday. Read that one first, if you haven’t yet! 🙂

My son had complex tics when he was diagnosed with Tourette Syndrome, but those tics subsided once life stresses were reduced and we were on the right path.  We were running away from tics with a trial and error of two pages of medication because we were told by my son’s Child Psychiatrist that it was the meds, while never suggesting it could be TS. Once we knew better, after consulting with a Child Neurologist, everything started falling into place, and his tics subsided. My son’s meds have been handled under the same Neurologist which simplifies our lives.

We are more fortunate than others because my son’s tics are mild in comparison to others, which often makes for a great conversation after they have been around my son long enough. They are surprised when I share the facts and they are intrigued enough to ask questions. Like many, they presumed Tourettes was just complex tics. Though I appreciate TS Awareness, I feel that only showing the severe cases of tics has made it more difficult when it comes to people really believing that my son has TS.

My advice to other parents is to never to accept the opinions of professionals as fact or what is best for your child while ignoring your expertise on your child. Ask questions and question what does not sound right. No one knows your child better than you.

Getting professional help is essential, but a one-sided approach is not realistic or beneficial when it comes to TS.  Ignore those who make judgements, and don’t feel guilty if you choose medication because it is not a decision made lightly. Continue reading

Keeping busy with Tourette

I am the mother of a wonderful, smart, sensitive girl who is also one of the strongest and most resilient people I know. She has Tourette Syndrome. It has been an emotional morning finding this site and reading so many personal stories that mirror our family’s experiences with TS over the past 5 years. Thank you everyone for sharing your experiences and helping me through what has been a difficult few weeks.

I wanted to share my thoughts regarding down time and TS. As discussed here, TV, iPods, iPads, video games definitely seem to have a direct correlation with an increase in my girl’s motor and verbal tics. I prefer to think of these devices as thoughtless activity.

But … I have also observed there are many activities that keep her mind and hands busy that help reduce her tics. Crochet, knitting, friendship bracelets — you know, all the crafty stuff. These types of activities seem to engage her body and mind.

I believe it is the problem-solving aspects and the fine motor activity that helps — Legos, Kinex, Sudoku or other puzzles help, too. You may say, “Well, my child is not very crafty.” Keep in mind, mine has never finished any project. She does not seem to care about the end result, but the process is what she uses to keep busy.

The hoards of lose yarn and paper scraps that fill our home seem a small price to pay. As most of you know TS is fluid and nothing works all the time, I consider these activities like a soothing blanket but it does not always work.

We are still searching for the perfect fit for her, and we are considering guitar lessons since she loves Taylor Swift. (She is 11, so go figure!) We hope guitar will give her the fine motor stimulation and complex processing that seems to calm her tics.

Has anyone else had luck with activities that focus on fine mortar and cognitive problem solving? Any suggestions? I have a ton more questions to ask everyone but will start here and hope to continue building my knowledge base from everyone here. Thanks!

Advocacy and awareness: Necessities and parts of daily life, part 1

I don’t claim to have life as a mother figured out, especially having a child with neurological challenges. I am guessing other mothers have more patience than I do, but I am certainly not giving in or being too tired to be strong. It really is just one day at a time.

I felt powerless before my son was correctly diagnosed with Tourette Syndrome, which took more than 5 years. As expressed in my previous post awhile back, I had a difficult time getting the resources and support needed for my son in more than one school in our district.

Though I felt relief and empowerment when we got the diagnosis of TS, I still have had years of work to ensure the school staff and district follow through with what my son needs. I heard the same responses that others have when their child struggles in class and social challenges.

I knew when I met the teachers which ones my son was not going to do well with. The look in their eyes when I went out of my way to explain how my child was different would be met with a familiar feeling of “another mother who is overreacting.”

ADHD is severely misunderstood, and teachers either lightly acknowledge it or they dismiss it as just excuses. Before getting the diagnosis that made sense, my son was only getting halfhearted support through special ed — but only through his IEP, not because he was in special ed, officially. Continue reading

Finding the right school

kidsWhen Stink was first diagnosed with Tourette Syndrome, I was still holding onto hope that he would attend the Catholic school of my youth. He would play sports and go through the Sacraments and be just crafty enough to be adorable in his skinned knee navy shorts but obedient enough to get straight A’s on his report card be head altar server. It was an awesome dream and so much fun to fantasize about!

Then all the kids from his preschool got their acceptance letters into kindergarten. Stink did not.

Given I had no indication whatsoever from his preschool teachers that he would not do well at the private gradeschool (he always had glowing reports on his character, behavior and cognitive/motor abilities), I made an appointment with the grade school principal.

She was 5 years younger than me, but acted like a stern 60-year-old. As I sat there, looking at her somber face in front of an oil painting of the Good Lord, she informed me that Stink seemed very immature at the intake interview.

“He’s FIVE!” I responded, flabergasted. Continue reading

Don’t let a great opportunity pass us all by

Our son, Ethan, turned 12 last week in a residential treatment facility more than 1,000 miles from home.  It’s a hospital in Wisconsin specializing in the treatment of kids with tic disorders and debilitating obsessive compulsive disorder, resistant to the medicines and therapies typically tried.

Sending our son away for residential treatment was never an option for us — until it was our ONLY option.  A life-changer — both financially and psychologically — NS a minefield of parental guilt and self-doubt, it is a bold move, but our only hope for even close to a normal life for him.

As parents of kids with Tourette Syndrome know, our kids see profound suffering throughout their young years, and the pain can be unbearable for those of us who die a hundred deaths along with them — when the calls for playdate invites stop altogether. When he gets yelled at by the bus driver or substitute teacher again for things he can’t help. And when a crowd on the street erupts in laughter when OCD has him stuck in an embarrassing ritual.

When Ethan comes home from Wisconsin months from now, we’ll rely on health-care providers locally and hope they’ll have the knowledge and experience to manage his after care.

Realistically, however,  we know the paucity of research, funding and academic programming devoted to the education, treatment and a cure for TS makes this much less likely than it would be with most any other illness or disorder. Continue reading

Please offer your advice to a mother in need

I want to repost an e-mail I received from a reader who is going through a hard time. If someone feels moved to comment in support of her, that would be awesome. More to follow!

Hi Andrea! I cannot tell you how much it means to me that you took the time to respond to my e-mail.  And yes, you are very correct.  I am struggling right now, not for the first time, but it seems to get harder for me each time we have a major tic flare up.

I’ll tell you our story, and try to abbreviate it as much as possible…

Anthony is currently 11 years old.  He started having tics at 6 1/2, some eye-blinking, lots of swallowing, throat-clearing, and eventually (at about 7 years) a high-pitched squeak/squeal, that was really almost was more than I could bear.

At that time, we started seeing a psychiatrist, who was recommended by a friend whose son was on the autistic spectrum, with motor tics also.  This Dr. recommended we try medications because the tic was so loud and disruptive, and also because Anthony was extremely underweight, and we hoped that meds would help with both issues. Continue reading

Support HR 146 — proposed Tourette Syndrome legislation!!!

As a scientist and father of 2 kids with Tourette Syndrome, I’m often pretty frustrated with the state of our understanding of the causes of Tourette and its frequency within the general population, and with the limited treatment options available.

Yes, we have undoubtedly made significant inroads (awareness and understanding of TS has improved, the introduction of habit reversal therapy as an effective alternative/complement to pharmacotherapy, and research efforts such as the ongoing work of the NJCTS Cell/DNA Sharing Repository which promises continued identification of genes associated with TS and the hope of more effective therapies).

But we need to do more to collect data that identifies the number of affected people more accurately and the range of co-morbid conditions associated with TS, and accelerate research efforts to better characterize the underlying biology. Only then, armed with this more complete understanding of Tourette, will we be in a position to identify improved therapies.

Additionally, many kids and families suffer without a diagnosis for years, often because of limited awareness of the disorder by professionals in both the medical and education communities – increased outreach to elevate awareness and understanding of TS, akin to services provided by the NJCTS, are critically needed throughout the country to ensure that the stigma associated with the disorder burdens fewer children and adults. Continue reading

Tic with joy

One of my resolutions this year is to write more, both at this blog to support other moms and for my career.

With that in mind, I reached out to my local papers with a pitch I had. They both accepted it. It was to interview Cathy Rigby — of gymnast fame — who is starring as Peter Pan at the Pantages in Los Angeles.

What started out as an interview for press purposes quickly became a 15-minute encounter with a woman who is short in height but high in spirit. I don’t know what to say other than “She gets it.” She is a big believer in allowing our kids to fail to build life skills. She promotes the journey, not the destination. She doesn’t believe that we ever have to stop transforming and stop building on what we have.

In addition to my article being published in local papers, I published it on my own blog here. I figure, slowly but surely, I will build up a reserve of quality articles and stories that give me more opportunity to work for myself instead of editors.

It will give me the chance to surround myself with more quality artists like Cathy Rigby. It will allow me to focus on the positive in the human spirit, not just the buzz of the celebrity bandwagon. Continue reading

Study: Prevalence of tics among South American schoolchildren

According to a new study, “Prevalence of Tics Among 6- to 12-Year-Old Schoolchildren in the Itagu Municipality, Colombia, in 2010,” in the Journal of Child Neurology, tics are the most frequent movement disorder in children, and they are most prevalent during the school-age years.

Most tics are transitory; however, certain tics can be chronic, causing negative repercussions at school, within the family and socially. In some cases, tics are associated with obsessive compulsive disorder, attention deficit hyperactivity disorder (ADHD) and other conditions that require diagnosis and prompt treatment.

In South America, there are no indexed studies determining the prevalence of tics in school-age children. The aim of this study was to establish the prevalence of tics in schoolchildren aged 6 to 12 years. From 16,000 students aged 6 to 12 years who were enrolled in first to fifth grade, a sample of 346 school-aged children was chosen via a multistage sampling process that randomized the educational systems in terms of proportional size and the stratification between public and private schools and adjusted for the design effect.

The students were screened and those who were positive for tics underwent clinical evaluations and semistructured interviews by the researchers to determine the prevalence of the disease. The parents and teachers of 323 students returned our surveys (93.3 percent). One hundred thirty-eight students (42.7 percent) were considered positive for tics based on parents’ and teachers’ reports.

The clinical evaluation established a 17.9 percent prevalence of tics (58 students), and 25 students (43.2 percent) also met diagnostic criteria for ADHD. Of the students with tics, 27.6 percent presented with transitory tics, and 72.4 percent presented with chronic tics. Tourette Syndrome was detected in 11 of the children (3.4 percent).

The average age of child with tics was 9 (+/- 1.5 years), and the majority of the children with tics attended third grade at a basic primary school. Children from public and private schools were equally likely to present with tics.

Tics are noteworthy in our field and are associated with other neurobehavioral disorders, such as ADHD. Both tic disorders and ADHD require diagnosis and prompt treatment to promote social and school performance.