Stress can cause tics to rage out of control

I sit here on a Sunday observing my daughter from afar. She is working on decorating a cake for one of her art classes and the project is due tomorrow. My heart aches as I watch her because her tics are being a great nuisance to her today. It makes it so difficult for her to create manual little sculptures to put on top of her cake with all the hand and torso tics she is experiencing.

What drives me crazy, though, is the fact that one of the reasons her tics are so out of control is because she is stressed. And she is stressed because like always — or almost always — she leaves her work for the last minute.

I have a constant battle with my D. Our battle consists of her not being able to prioritize.  She believes there is no problem with the manner in which she handles her school work — or anything else in life, for that manner. This is the ADD part of her diagnosis.  This is a greater issue, I believe, than her tics — even though when the tics are like today, I don’t know which is worse.

I constantly tell her she will not be able to completely succeed in life if she does not start scheduling her tasks accordingly and give herself the time needed to complete them and not have to stress herself out. I swear sometimes I think she does it just to spite me because I live my life stressed out trying to ensure she does everything that she needs to.

My daughter is very stubborn and very set in her ways. We have been in counseling throughout her life. Currently we see a psychologist every two weeks. Her doctor tells me that I need to let go of some of this stress I put on myself. She insists that if I do not let my daughter fail or come close to failing, then she will not see the need to change her ways.

As a mother, this is advice I have not been able to follow. During her senior year, I couldn’t because I needed to ensure her grades stayed high so that she would qualify for a scholarship ,and now I can’t let her fail or come close because she needs to maintain a certain GPA to maintain the scholarship.

There are days when I say to myself, “Look it all worked out. You stressed over nothing, but the reality is it is not over nothing.” I know I will not always be there to guide her to ensure she succeeds. At some point, she will need to do this on her own. I just don’t know when the time will come that I will be able to do this.

Beginning of the school years can be tough

This will be the first of maybe two or three posts which deal directly with the school years, as I intend to elaborate on them from the time my daughter was diagnosed with TS and ADD.

I would like to briefly clarify before I go into our experiences with the school system that my daughter and I overall have been tremendously blessed. My daughter was blessed to be surrounded by teachers, other school personnel and students that were caring, accepting and understanding yet expected excellence, as they knew she was capable of accomplishing tasks like any other individual — with the right accommodations in place.

She was never bullied or made to feel that she was an outcast in any way. We did have hurdles in the beginning, and I had to fight for her rights and even hire a lawyer to help me fight my fight because I refused for her not to be given all the opportunities she was entitled to.

Most of my fight was early on, in and around the fifth and sixth grade and then again when she was going to graduate eighth grade. Most of my fight was with a handful of individuals and with all the individuals that have been involved in her success I would say that is a pretty impressive statement that can be made.

I clarify this because it would not be fair not to give credit to all those who have touched our life in such a positive manner, but I want everyone to know that had I not fought the school system, my child would probably not be where she is today. Continue reading

Bevy of tics and medication don’t keep daughter from being ‘great’

The intent of my first post was basically to introduce my daughter and I to this site — to give a brief overview of how it all started and were we are at this moment. I, as many of you who have been dealing with this diagnosis for so many years, want to help those of you who have just begun your journey by offering you our experiences.

Even though I am 10-plus years into this journey, I, too, believe there is still much I can learn from everyone who participates on this site because although my daughter is 18 years old now, our journey is not over by a long shot. I embrace every day as an opportunity to learn, to become stonger and to teach others.

I have always told my daughter that I believe she was destined for something great, and I believe that her TS was meant to teach others. She advocates for herself and in doing so is spreading the word.

The following is a response to Kevin, who commented on my initial post. My daughter has many tics to this day. I know that the prognosis in a lot of cases is that the tics will diminish as the teen years pass; however, my daughter’s tics have been constant throughout her life. The following is a list of her tics: Continue reading

A hearty NJCTS thanks to all our contributors and readers

On behalf of the entire staff and network of board members, presenters and volunteers that make the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) what it is, I would like to extend a gracious THANK YOU to all of the contributors and readers who have helped make the TSParentsOnline blog a rousing success over the first three weeks of its existence.

We already have received more than 3,000 page hits on our 25-plus posts and 75-plus comments. That might not sound like a lot in the grand scheme of things, but for a newly launched blog by an organization our size, it is a tremendous response. And in the next few weeks and months, we expect the blog to grow exponentially — especially with our burgeoning following in the United Kingdom! (Thank you, @TSFocus on Twitter!)

But to make that happen, we need more contributions from you, the parents! We would love to double our already two-dozen strong contributor list, all we need to bring that to fruition is to hear from you! So if you are interested in participating in the TSParentsOnline blog, please drop us a note today by e-mailing parents@njcts.org.

There’s nothing quite like being part of a community that is doing something big to help others, especially those in the Tourette Syndrome community — for which there just aren’t that many resources outside of the magnificent ones NJCTS provides.

So what are you waiting for? Open up your e-mail browser and drop us a line. We would love to hear from you. And after that, go join your family for a wonderfully prepared, succulent Thanksgiving feast!

Happy Holidays!

Jeff Weber
TSParentsOnline Blog Administrator
parents@njcts.org

Complex set of tics making Dylan’s life much more difficult

If you ask him, “How are the tics? Are they bothering you?” he will shrug and say, “I don’t know,” but that’s not quite true. He’s 13 – the tics are intense and he can be driven to tears at times when he feels powerless to control his body or his thoughts. If Tourette Syndrome was his only problem, though, life would be much more manageable.

My son Dylan has a combination of challenges that make life difficult for him and those around him. Our first concerns, when he was in preschool, were social problems. The preschool teachers were worried because he didn’t play with the other children. We suspected he was on the autistic spectrum, possibly Asperger’s because of his advanced verbal skills. A pediatric neurologist suggested “pervasive developmental delays.” His lack of social awareness definitely complicates things since he doesn’t care that his behavior bothers other people.

We took Dylan to so many doctors, trying to find answers. We were concerned about his lack of understanding of social cues and about his attention and impulsivity problems. I read that 70 percent of children with Tourette Syndrome also have ADHD. He is one of those. Honestly, the ADHD symptoms cause a lot more problems in school and in the world than the tics. In second grade, he got pulled out of PE for sometimes wandering away from the group and other times spitting on, punching and pushing other children.

We have been through the roller-coaster of medications. There were those that helped with attention but made Dylan unable to eat or sleep. In sixth grade, medication made him less impulsive but he was falling asleep in class and struggled to walk half a mile. Some meds seem to control the tics a bit, but I sometimes wonder if the medications do much good. The way to test it is to take him off – then the tics and impulsivity go through the roof. I feel like we’re medicating him to keep him out of trouble. He tends not to hurt other students when he’s on ADHD meds. Continue reading

5 things that can help with tics

When my son was first diagnosed with Tourette Syndrome at 4, I didn’t want to put him directly on meds. His tics were mild and simply didn’t warrant them. I was open to the idea of drugs should his symptoms become unmanageable, but until then, I wanted to do something… anything… to keep the throat clears, eye rolls and head nods to a minimum.

OK, who am I kidding? Like a bad high school boyfriend, I wanted those tics banished from my site forever. But to answer Doctor Phil’s question: “How’s that workin’ for ya?” I had to respond honestly, “Not so well. Time for plan B.”

I went through a lot of rumination and spent ginormous hours on the Internet researching sites, supplements and remedies that promised to end TS. Here are five things that actually really helped in my son Stink’s case.

As if it weren’t already obvious with my use of language such as “ginormous,” let me reiterate that I am not a doctor, so please run everything by a practitioner you trust should you follow any of this advice. Continue reading

Not Making It Up: The first of many posts about doctors

I am sitting here eating the most ridiculous dinner ever (one protein bar, one Klondike bar, one Diet Pepsi), feeling quite proud of myself for not having a vodka martini instead.  Frankly, I feel like crying.

As I mentioned in one of my first posts, O’s latest tic blocks his airway.  This is not the first “choking” tic O has had.  He had a weird spasm in his neck – he called it “rooster neck” – that quickly morphed into throwing his head back so his chin pointed straight up into the air.  Breathing was difficult in that position, and we or he had to grab him by the hair and force his head back into a more appropriate attitude.

The whole thing looked weird, but we learned to manage it, as we have learned to manage so much.  The more severe tics O has had in recent years often involve body parts becoming locked in unnatural positions, and he usually needs help unlocking.

The newest iteration of the tic is entirely internal.  We are not entirely sure of the mechanics of the tic, but it appears that O’s epiglottis slams down over his trachea and does not release until O’s airway is forced open.  O has learned to hurl himself over the arm of a chair or sofa to reopen his airway, but if no furniture is handy he must signal for help.  Thus far, his airway has not reopened without assistance.

The funny thing is, O’s tics are worst in spring and fall.  There seems to be a link between O’s seasonal allergies and his tics.  O is the only member of our family who is looking forward to winter, because he thinks he will feel better once the temperatures have been below freezing for a while.

So, today, after an afternoon spent opening O’s airway every 30 seconds or so until the Claritin took effect, I made the time to call an allergist. Previous visits to allergists have been inconclusive or disastrous, but I felt I needed to try again. Continue reading

Everyday tasks are insurmountable obstacles

Why is everything a fight with her?

This was our daily, sometimes hourly, lament with Bean. She would fight having her teeth brushed, fight getting her face washed, fight getting in the car seat, fight getting strapped into the stroller. Fight getting dressed; fight getting undressed, fight leaving home; fight returning home. Everything. Always. It seemed that nothing was ever easy with her.

When I witnessed other kids happily going through their daily routine of getting ready and out the door, my jaw would drop to the floor. And these parents, they didn’t have to use the constant creative tactics I did. They just went about their business.

No constant singing of songs to make the tasks fun and inviting. No imaginative turning-their-child’s-mouth-into-a-dollhouse-and-cleaning-all-the-furniture-inside tooth brushing games. No turning on Dora just so they would be distracted enough that mom could quickly slip on their clothes without them even noticing. No funny noises, funny faces, crazy dances, promises of rewards. Nothing. Despite all my research, I could not figure out why Bean had such a hard time with these simple, everyday tasks. Continue reading

Battle with tics was rough, but daughter now is succeeding in college

I am unsure exactly when the TS actually started. From the time my daughter was about 2 years old, she began to experience what at the time was believed to be allergies and asthma; therefore, she was treated with medication for these ailments for a few years.

As time passed, I started to notice that she would move her shoulder blades in a manner that would make a loud noise. When I mentioned it to her pediatrician, the doctor told me that my daughter was actually taking her shoulder blades out of her socket. I was amazed that my child could do such a thing.

The doctor told her not to make it a habit of doing this, as with time it would damage the socket and by the time she was in her 20s it would become very painful.  At this time, she also had what I know now was a tic. She would constantly throw kisses to me, and at first I thought it was adorable, but after a few months it began to get annoying and I would ask her to please stop.  Around this same time, she began the eye blinking and the pediatrician mentioned that this was probably a nervous tic so I should just ignore it.

When my daughter was about 7 years old, I decided to take her to a psychologist because we were having some difficulties.  This psychologist was a blessing. I would say in the second visit or so she said to me that she wanted us to see a pediatric neurologist which she was familiar with because she thought my daughter had TS from the mild symptoms she noticed in her.

During our visit with the neurologist, she asked many questions and then gave me a questionnaire to give to the teachers and one for myself, but she did say she was almost certain my daughter had TS.  It’s important to mention that this doctor was familiar with this syndrome, as she had previous patients with TS.  Never in my wildest dreams could I have imagined that this would be the beginning of what I still refer to as a roller-coaster ride. Continue reading

Infant behavior before Tourette

Hi all.  I was wondering if your child had any “strange” infant /toddler behavior?  My son with TS was a C-section baby (my daughter was a C-section as well and has no symptoms) and a screamer. I say “colicky” but the doctor never labeled him with colic. Also, he spit up a lot — even from soy, so I went back to regular formula.

I tried alternating breast feeding with formula for two weeks, but had to stop since I spent most of my day not eating because I was pacing the floor as he slept — no nutrition from mom.

Even though he spit up a lot, he gained weight fine, so it really wasn’t an issue.  My son ALWAYS wanted to be held but I had to stand.  If I sat, he’d wake up screaming.  (How the heck did he know I sat?)  Fortunately for me, he did NOT want to lay in bed with us, or he’d probably still be there. 🙂

Yes, after the three-month mark the screaming was better.  He still spit up until a little after 14 months and a couple months after switching to milk.  He also put everything in his mouth for a really long time.  Toys,  paper,  leaves,  etc.  He was a pretty good eater back then.

Now, almost 10, he’s quite picky and doesn’t eat cooked vegetables.  Only raw!  Well, I asked about infant/toddler behavior, enough about now.  Thanks.