Our Journey

Recently an old friend from college reached out to me after seeing my first NJCTS blog post. We hadn’t spoken in well over 10 years and we were both surprised by this new common bond we had. Her oldest daughter was just diagnosed with Tourette syndrome at age 7. My friend was looking for some support, still processing her daughter’s diagnosis and still reeling from the shock. She wanted to know about our experience having two children with TS.  How old were my kids when they were diagnosed? What were their initial symptoms? How are they doing now? Are they on medication? Which ones? Are they in therapy? How’s it going? How about school? Do they have special accommodations? We immediately knew that a 20 mins phone call wasn’t going to cut it! We need more time and we are in the process of creating that. This experience gave me the idea to write a new blog post. Perhaps other parents of the newly diagnosed had similar questions.

I vividly remember the sinking feeling in my stomach during the early days of Maddie’s diagnosis. I vacillated between worrying about her future, sadness watching her tic (ironically she wasn’t bothered by most of them) and heartbreak that my “normal healthy child” was no longer either of these things. What got me through was the support of other parents. Hearing how well other kids were doing years after diagnosis gave me comfort, relief and strength. So here I am to tell you that both of my children are doing incredibly well. They are thriving in school, very social with lots of friends and active in sports and other community activities.

As a recovering “doer,” after Maddie was diagnosed, I jumped into massive action. I searched high and low for ways to manage/reduce tics. I came across all kinds of recommendations and books. We started with dietary changes. Although a gluten and dairy free diet made no difference, cutting out food dyes and artificial colors did. Limiting chocolate intake and reducing sweets seemed to make an impact as well.
I noticed that after Maddie would recover from an illness, her tics would go into overdrive. I began to research different ways to build the immune system to protect her from getting sick so frequently. As a daycare kid from 4 months of age, Maddie was always fighting something. My friend who is a pharmacist supported me in getting Maddie on a great natural multivitamin, fish oil, a powerful probiotic (gut health is apparently linked to brain function), vitamin c and magnesium. The vitamin section at Whole Foods became a frequent stop for me. We also had Maddie’s tonsils removed. Maddie had 9 bouts of strep by age 6. She was actually diagnosed with PANDAS by one of the three neurologists we took her to. My husband and I noticed a big (and positive) difference in the frequency of her illnesses with these changes. That said, definitely consult your doctor before starting your child on a vitamin regimen. This certainly is not my area of expertise.

The next important area we focused on was school. We immediately got Maddie a tutor (to build her frustration tolerance) and a 504 plan. Some of her accommodations are:
• Provide instruction in a calm, structured setting
• Modify homework assignments as needed
• Energy breaks as needed
• Inform all staff members who have contact with Maddie including substitute teachers of her diagnosis to better understand Maddie’s needs
• Provide a private location (counseling office or nurse’s office) to let tics out and/or emotional release as needed
• Provide staff development on Tourette’s syndrome as to increase awareness and education
• Provide progress monitoring for academic and social/emotional needs reported to parents 2 times per month
• Utilized alternative space for testing taking (study carrel, small table)
• When appropriate provide study guides
• Provide student support to help dissipate tic urges (ie stress ball, chewing gum, hard candy to suck on, etc)
• Provide student support in organization of locker and binders 2x monthly
• Encourage asking for help if needed or if she does not know the answer to a question
• Consultation with guidance counselor 2x per month for September and October
• Modify assessments for spacing in order to make assessment for visually manageable (ie. Reduce the number of math problems on page, reduce the number of graphics, reduce the number of tasks per page, etc.)

Next, my husband and I spoke with Maddie’s neurologist about medication. He recommended that we think about how we would know it was time (if ever) to treat Maddie with medication. My husband and I decided that we would revisit medication if any of three areas of Maddie’s life became negatively impacted by her tics and/or co-morbid anxiety disorder and OCD like behavior. These three areas were: sleep, social and academic. I wrote a letter to the neurologist explaining our rationale. In truth this was more for me than for him. I wanted him to hold me accountable to what I said if/when the day came. Medicating my child was not easy and I was very frightened at the prospect. I needed someone to hold me to my word and not allow me to push treatment off out of fear.
Finally, came counseling for both Maddie and me. We were very blessed to find great therapists. Maddie worked with Dr. Lori Rockmore in Millburn, NJ. Dr. Rockmore taught us about Exposure Therapy. At age 6, this type of therapy worked wonders for Maddie. Her triggers were largely around clothing at that age – a jean skirt that laid funny on her waist, her socks needing to lay perfectly straight on her toes. Dr. Rockmore explained that the earlier we started with Exposure Therapy, the more effective it would be in the future. After success with Dr. Rockmore, when my husband and I start noticing new obsessive behaviors/fears, we began quickly implementing Exposure Therapy. We’ve been fortunate to catch the behaviors early and successfully intervene. Incredibly, through some networking, I was referred to a therapist for me that works with parents of children with TS, Gayle Forman, LCSW, ACSW, MSW. TS is one of Gayle’s areas of expertise and she met me with patience, compassion and strategies to get through flare-ups.

Our journey has been and continues to be unique to us. Our son’s experience of TS has been similar but certainly not the same as our daughters. My intention is to support other parents in their journey. As always, feel free to reach out to me at any time. My commitment is to support other parents through early diagnosis and challenges related to their child’s experience with TS.

Emily Golden, ACC
Coach & HR Consultant
Golden Resources, LLC
emily@golden-resources.com
www.golden-resources.com

Tourette Research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013Atlantic Neuroscience Institute at Overlook Medical Center routinely offers studies and clinical trials in a range of neurological and movement disorders, including Tourette syndrome. To learn more, please contact Caroline Sabatino, Research Associate, at 908-522-5901. 

 

Pediatric Tourette Trials

Ecopipam Treatment in Tourette syndrome

  • The purpose of this research study is to evaluate the effects an “investigational” drug (ecopipam) has on tics in subjects aged 7-17 years with Tourette syndrome (TS). Investigator: Roger Kurlan, MD

 

Multimodal Dietary Treatment in Tourette syndrome

  • This study is open to patients ages 12 -18 with Tourette syndrome (TS) and aims to evaluate whether a multimodal dietary approach will improve the symptoms of TS. Investigator: Roger Kurlan, MD

 

A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Pediatric Subjects with Tourette Syndrome

  • This study is open to children and adolescents ages 6-17 who have Tourette syndrome (TS), and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

Adult Tourette Trials

A Randomized, Double-blind, Placebo-controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

  • This study is open to adults ages 18-64 who have Tourette syndrome (TS) and seeks to determine how two different doses of an “investigational” drug (NBI-98854) will affect tic severity. Investigator: Roger Kurlan, MD

 

7 Things to Help Reduce Tics!

Editor’s note: We welcome blogger AndreaF back to TSParentsOnline with a follow-up to her popular post from a few years ago. What are your experiences with these methods to reduce tics? We’d love to hear from you.

7-tipsBefore my book came out I was blogging pretty regularly for the New Jersey Center for Tourette Syndrome. One of the posts that garnered 61 comments was on Five Things that Can Help With Tics.

A few years later, and with more research, I have decided to update the list a bit for new parents who keep writing me with the same question.

Question: How do I fix the tics?

Answer: There is no one-size-fits all answer. Every child is different.

What Can You Do If You’re Freaking Out About Tics?

I’m no doctor, but after 10 years at this I can passionately state that all kids tic for a variety of reasons. I, personally, didn’t feel medication was the answer right off the bat for my son. It still isn’t. If it got severe enough, of course I would consider it, but so far it has not.

Here’s what I tell all parents who write me with concerns over their ticking kids. I tell them to ask a few important questions – the same ones I asked myself.

Questions to Ask if Your Child is Ticking

  • Could there be vitamin deficiencies happening?
  • What kind of environmental stressors could be worked on? (Less tension at home, less electronics?, etc.)
  • How much sleep is your child getting?
  • What kind of exercise is your child getting?
  • What does your child’s diet consist of?

It’s Up To You!

None of these questions are meant to either shame or suggest there are simple answers for complicated tic issues. Again, each child is different. My suggestion is to go to a naturopath and have your child evaluated for his/her individual condition. If you are low on funds (which I was) you can start with the basics and see if this helps. It helped in our case and I hope it helps in yours!

supplements

5 Things to Help With Tics

  1. Magnesium: I gave my son 500 mg of magnesium a day, and it really helped with his eye rolls and vocals. For some little kids this might be too much, but I’ve been told the worst thing excess magnesium can do is cause diarrhea. Now my son takes a calcium/magnesium supplement as the magnesium is best absorbed with calcium. The ratio is double the calcium to the magnesium.
  2. Gluten Free: It was a pain, but it helped, and continues to help enormously. He can concentrate more and can fall asleep quickly. When he was not gluten free, it would take hours for him to settle down. He is still a high energy kid, but much less so now.
  3. Dairy Free: Ditto the gluten. It was a pain, but we’ve found many ways to supplement his calcium through rice milk, vegetables and fruit.
  4. Sleep: 10 hours of sleep a night is crucial and a huge tic reducer.
  5. No artificial flavors or preservatives: My son is very sensitive to chemicals. They can set tics off like bees around a honey pot. Not worth the sting of excess tics except on special occasions.

2 Other Supplements * Talk to you Naturopath first * 

6. NAC  – Standing for N-Acetylcysteine, this is an amino acid that can be purchased at any vitamin store. This natural supplement acts as an antioxidant and glutamate modulating agent.

According to this webinar, featuring Dr. Mark Mintz, “They (a study) found the N-acetyl cysteine decreased symptoms of trichotillomania (hair pulling) compared to placebo. It makes theoretical sense as NAC can modulate dopamine. So, there are reports that NAC can improve mood disorders as well (such as obsessive compulsive disorder). There needs to be more research and reports to have a better handle on the effects of NAC in Tourette, but it appears to show some promise.”

7. Taurine – I talk about Taurine here. My son is currently on 500 MG but I think he could use 1000. That said, I will talk to my naturopath first!

What have been your experiences with tics? Did any of you find it made a difference for your children? What about in some of your cases where tics were more severe? Would love to hear!

Until next time, may God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Mothers Tell Stories…

here-comes-the-domAnd so here’s mine. It seems as if the moment my kid hit 13 the teens hit full force. The defiance, the arguing, the overall surliness.

And, well, if I’m being honest, I thought it was going to be one of those deals where my kid, while still totally socially appropriate, would still find me amazing and cool and, despite being busy with friends and outings and Boy Scouts, would want to jump in the car the moment I say, “Hey, who wants to the grocery store and crash the free sample table!”

Every single little dream there? Lost. We’re not talking by a little. We’re talking epic defeat. For one thing, my kid is far from winning any social awards at school. Oh, he has a bunch of friends, but they’re kind of like him… a bit on the wacky side… a little bit clueless on the when girls like them side. (Yes, Stink, if she remembered to call you on your birthday, buy you a gift, buy you a Christmas gift and ask you to teen night, there just might be some interest.) Boy Scouts He doesn’t do uniforms.

Stink and his friends are like oversized male children with skinny legs, crazy fros and a scent that can only be described as a cross between testosterone and Axe.

The difference between him and his other friends, however, is that I can’t make out their duck quacks from across a crowded parking lot. When they roll their eyes, I know it’s because they are being sassy and not because Mr. Flappy Lid has made his appearance again. When his buddies nod, it’s to mean “yes” or “no”, and not the head jerk prodigal son making his triumphant return. (No, I’m not having a banquet for these returning relatives. But if I did, you could bet it would be gluten and dairy free.)

Stink’s tics – the loud ones – are back. And this time, they are stronger than before. (Gosh darnit, Taurine, you let me down again. You’re like that bad boyfriend. Just when I think I can trust you, you leave my sorry butt in a heap of despair!)

Here’s the thing, though: my kid, like his eyes, just roll. He doesn’t see them as a problem. They don’t make him different or geeky or less than. It’s simply something he does, not who he is.

In my brain, this should be enough. But in my heart, I still die a little bit. As a mother of a kid with this wonky disability, I fight so many demons:

  • Do I not love him enough for who he is – including his noises?
  • Do I not love him enough because I’m not making him take meds?
  • If I am not choosing to not put him on medication, then am I ruining his life with my occasional “Keep it down, kid. PLEASE!” (Oh yeah, Saturday’s “G-DAMNIT, STINK, QUIET DOWN FOR ONE SECOND!” was epic. He literally curled into the door frame of the car and didn’t talk to me for ten minutes. He also didn’t tic. And that made it worse. I won! For being a butt wipe! Hooray for me! Send the Mommy Shaming Award my way, FedEx!)
  • And what about his sister? I have spent soooo much extra time with her the past few years – I’ve wanted to… it’s not a challenge – but it’s a balancing act to say the least.

I had a good cry last night. I mean, a good one.

Me: Stink, I’m so sorry. I just suck sometimes. I feel so bad for yelling at you about that noise.

Stink: Mom, it’s okay. (Quack quack) I forgave you already! I don’t keep resentments!

Me: I know, but I feel awful. I just love you so much. I don’t want to ruin you.

Stink: Impossible!

Me: Well, thank you. And hey – I promise – I am not going to ask you to stop ticking again.

Stink: Also impossible! (He’s right. Now I’m really sobbing.) It’s okay to cry, Mom. You got to let it out. (He farts.) Ahhh… it just feels better to release, you know?

I swear, the noises from that kid never stops. But his biggest ticker is his heart. I’m grateful.

And so, once again, I am saying it here: I am determined to not get so wound up on tics. But I can’t do it on my own. I just can’t.

Dear God, get in the car and hang with me. Don’t drive like that Jesus Take the Wheel Song. That would creepy to see a long haired dude in a tunic driving my stinky SUV. But be with me. I need the support. Andrea. PS: I hope you can handle Cheeto crumbs and Country Music. 

Yup, when I give it to God, there’s just so much more perspective.

This morning, after a little praying, it dawned on me that I might not ever accept this disorder. I can, however, accept that it’s sometimes just hard. The reality of what is, not what I want it to be, was not always my first choice toward serenity, but it sure as hell makes for a more a more peaceful reality. I can do something with reality. I can fill bad days with joy. I can walk away from yelling at my kid and stroll in the sunshine instead. I can write. I can pray. I can help another mom who is suffering. (Write me, moms! HappilyTickedOff@Gmail.com).

When God’s at the center of my problem, not my misery, I can relax. I can remember that it’s not my job to make my son disability-free. It’s my job to love him. And boy, do I.

Final Thoughts

Tonight I took a break. It had been a long day of working and cooking and kid pick-upping and homeworking. Instead of sitting at home counting tics doing more Ebay listings, I went with my daughter to a YMCA banquet. She was one of 3 asked to perform for a fund raising event.

Playing Wendy in an upcoming Peter Pan show, she put on her yellow Mary Janes with white ankle socks. She stood straight, hair in bun, and spoke in a sweet British accent, “She’s the person who kisses you goodnight…” and then she sang… “your mother and mine… your mother and mine.”

She went on to sing, “Mothers tell stories… they often do… what you can’t do… mothers can do.”

Raising my kid with Tourettes isn’t unlike my daughter getting up on stage, singing in front of hundreds. I get to hide my fear with my poker face. I get to get dressed every morning (the bun is optional) and I get to sing my heart out because the lights shining on me. And maybe, at the end of the day, my son will remember his mother who loved him enough to write a book, to pen a blog, and hopefully help a few others out there not feel so alone.

“Mothers tell stories, they often do, what you can’t do, mothers can do.”

Moms, you can do it. You can. And worse case, if your day is hard, consider climbing into bed with your family – tics and all. You’ve got one childhood to tell a good story. (Pssst: You are an amazing hero in this story. Give it a good ending!)

my-familyThis post dedicated to Denise, who always seems to show up when I need it most. I am grateful. 

Until next time, May God grant you the serenity to accept the tics you cannot change, the courage to change the tics you can, and the wisdom to know the difference.

My book is available on Amazon. Follow me on Twitter@AndreaFrazerWrites or on FB

Three research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Randomized, Double-Blind, Placebo-Controlled Study to Assess the Safety and Efficacy of NBI-98854 in Adult Subjects with Tourette Syndrome

Ages: 18-64

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02581865

Study 3: Ecopipam Treatment of Tourette’s Syndrome in Subjects 7-17 Years

Ages: 7-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02102698?term=Ecopipam+treatment+of+Tourette%E2%80%99s+Syndrome+in+Subjects+7-17+Years&rank=1

Concerned about my son’s Tourette Syndrome, OCD, and ADHD

My son, Anthony, has Tourette Syndrome. Anthony is 9 years old and started displaying mild tics around the age of 3. The tics would wax and wane, the severity of them never being bad enough to be disconcerting to Anthony or myself. He did very well in school, was very sociable and was always on his best behavior.

Then came second grade. About halfway through the school year Anthony’s tics got worse, going from simple to complex and including phonic as well as motor tics. His behavior also began to change. He became more disagreeable, argumentative and began to be disruptive in class. He grades started declining and his teacher expressed concerns about his well being and self esteem. We went to the neurologist again and this time they diagnosed him with Tourette Syndrome.

Anthony also began displaying obsessive compulsive behaviors and was then diagnosed with OCD. The OCD got to the point that it was far worse than any of the tics he displayed and was extremely unsettling for Anthony. He began CBT to help him say no to OCD and gradually it got better. It hasn’t disappeared, but is much better than it was. In the midst of all this, we also had reasons to believe that he also has ADHD. His reading and writing skills have plummeted; he cannot retain anything that he reads. He is unable to sit still and focus in the classroom and is disruptive to his schoolmates. Even watching a movie at home is difficult, we have to constantly rewind because he missed something. At first I thought it was because he was giving so much energy and concentration into just getting through the day trying to manage the symptoms of the Tourette and OCD. But, the psychiatrist said that we’d be able to tell the difference with appropriate evaluations. So, we did the evaluations and and he had very high markers for ADHD.

So, Anthony has Tourette Syndrome with co-morbid disorders of OCD and ADHD. I have chosen to take a natural approach to treating his symptoms as I couldn’t bear the thought of all the negative side affects he’d experience being on the prescription meds. He has a very strict diet and gets a lot of exercise (he is on a travel hockey team), he takes homeopathic and herbal supplements as well as vitamin and mineral supplementation. He takes magnesium chloride baths several times a week and I do deep massage therapy a couple nights a week. He also has sensory issues and so we do dry brushing and have a weighted blanket for sleeping. I have seen an improvement with his tics and anxiety levels but it hasn’t helped his focus or retention.

I’m also now seeing his disorders affect him on the ice as far as being able to follow the play and know where to be. Hockey was his one safe place where he always felt at his best. Now, that is suffering too and it’s very upsetting to him. He hasn’t made the connection, he just keeps saying he is in a bad slump. His symptoms also seems to be cyclical in their severity, with the Fall/Winter being the worst and the Spring/Summer the best. I contribute this to a build up of anxiety as the new school year begins, but I am not positive.

I’m at a point where I’m now considering trying medication as I do not want to see him struggle another year, barely getting by in school, nor do I want to see his game start to decline because hockey means everything to him. Before the onset of the Tourette, OCD and ADHD he was always ahead of grade level with everything. I can see that his self esteem is suffering a bit and that hurts the most. He is such a wonderful, caring human being. I want him to accept himself for who he is and embrace his struggles, as I know in the long run they will make him stronger. But, I also want to help him in any way that I can without harming him in the meantime. I don’t know anyone with a child who has similar issues and so I wanted to find a group that could relate to what we are going through and from which I might gather new ideas for approaching the treatment of his symptoms. I just feel very lost and very frustrated at the moment and I wish that I had some help in making these tough decisions.

Two research opportunities at Overlook Medical Center

best_f7c13c1e8fb2ac083d12_OMC_Logo_2013

Study 1: Multimodal Dietary Treatment in Tourette’s Syndrome

Ages: 12-17

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

Patients with TS age 12-17 are eligible to participate. We are testing a group of dietary supplements that act to increase inhibitory chemical signals in the brain, detoxify environmental toxins, strengthen the body’s metabolism, and support brain nerve cell membranes. Subjects will also follow a Whole Food diet. The study lasts for 8 weeks and involves 3 visits to our office.

Study 2: A Phase2a, Open-Label Trial Evaluating the Efficacy, Safety, and Pharmacokinetics of Orally Administered SNC-102 in Adult Subjects with Tourette Syndrome

Ages: 18-75

Investigator: Roger Kurlan, MD, Overlook Medical Center, Summit, NJ

Contact: Caroline Sabatino, 908-522-5901

For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT02217007?term=synchroneuron+tourette%27s&rank=1

52 Weeks of TS: Week 51

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just ONE week remaining in this series, there’s a chance you missed one or more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.

I have described my TS through analogies, poetry, honesty and fear, but the reality is that I have TS. I am Troye Evers and I have Tourette Syndrome. I don’t like my tics, but I’m going to own them. I don’t like my OCD, but I’m going to grasp it. It is an endless struggle, but it is part of me, it’s who I am. My TS has taught me so much, and helped me teach others.

It’s been about a week since I have stopped taking the Chinese herbs and I have not seen a change. Do I have to wait another four to six weeks for my tics to go back to normal, or am I stuck with these new tics? Out of everything that I have tried this year, the only thing that I have noticed to actually help is the fish oil.

I don’t regret anything that I’ve tried. It was all a learning experience. Therefore, something didn’t work for me. That’s the thing with TS; it is really about trial and error. Just because it did not work for me does not mean that it won’t work for someone else, but like 52 Weeks of TS, I think I’m near the end of my journey of trial and error. I could continue experimenting with different medications and other rumored helpful remedies or I can just accept what I was given. By accepting what I was given, I would make myself stronger.

As we venture deeper into the season, my OCD’s get worse. This is a normal thing, it happens every year. The media does not help me with this. The news is always reporting about how dirty and germ filled different places are. The other night they did a report on café’s and how germs are spread and how many there are. It’s really just gross. Do you realize how many people don’t wash their hands after going the bathroom? Then they will go to get their coffee and fill it up with milk. Now there is feces and urine on the milk that I’m about to put in my coffee. Just one more reason to never leave my apartment.

It’s things like this that makes my OCD and Germaphobia so bad. I don’t think I feed into it too much; it’s more the stupidity of other people. I walk around and watch people cough and sneeze all over the city with no cares of who’s around them. This week, I actually watched two examples of people’s stupidity like this. One was on my morning subway ride to work.

As I’ve already said, the subway ride is usually the hardest time of my day especially for my OCDs. One morning I was on the train and across from me was a mother with her son who was about three years old. I sat there and watched as the mother let her child climb all over the seats, then lay on the seats and put his feet all over the window. These feet that are all over the seats and windows are the same feet that have walked all over the city that is cover in bird feces, dog feces and rat feces.

This was not the end of it. After the little boy put his feet all over the window, he proceeded to get up, stand on the seat again and put his face and lips on the window that his feet were just on. The mother did nothing. Are you serious? It’s just absolutely disgusting. Now everything that your child has stepped in all over the city is now in his mouth. They soon got off the train and someone else sat down in the kid’s seat and rested his head on the dirty disease covered window. That poor unaware person.

This was not the only thing like this I saw this week. I also witnessed a woman walking down the street with a dead bloody pigeon. It looked as if the pigeon might have just been hit by a car, but really. Are you really just walking around carrying a dead pigeon with your bare hands? Pigeons are the most disgusting, disease-covered birds in NYC.

I’m not really fond of any birds, I think they are all gross, but pigeons are the top of that list. They eat anything, including garbage and I have even witnessed a pigeon eating a dead pigeon on the road. One of my friends and I used to call pigeons “rigeons” because they are rats with wings, and now this woman is walking around with it in her hand. The only question I have is, when is it going to be legal for me to walk around and spray strangers with my Lysol?

Yet I am still here, so I’m going to keep on keeping on. I have a bigger battle — educating people about Tourette Syndrome. Until next week, “I’ll tic to you later.”

What’s A Tic? Part 3 — Treatment & Management

What Are Tics

There are multiple forms of treatment and management for individuals with tics:

  1. Medication – I’ve never needed medication myself, but for some people, medication is what really helps them get their lives back on track when the tics are too much to handle, and there’s nothing shameful about it.
  2. Diet – While I don’t believe diet will cure true Tourettes, I know that my tics get a lot worse when I don’t eat healthy food. The way I see it, your brain will only function as well as the fuel you put into it.
  3. Exercise – Because many tics are often related to anxiety, exercise is a great way to both lower anxiety and lower tics. After really strenuous workouts, I can often go 10 to 15 minutes where I don’t even feel the need to tic. (Heaven!)
  4. Behavioral Therapy – According to Tourettes Action in the UK’s article, “Behavior therapies and Tourette Syndrome,” behavior  therapy is being used to help some individuals with tics by helping them learn to be mindful of what their brains and bodies are doing.
  5. Deep Brain Stimulation – This is the type of treatment talked about in the video clip posted above, only used for the most severe cases, as it’s still considered experimental.

One of the most important parts of treating and managing tics is simply the diagnosis. Once you know you’re dealing with tics, it can be easier to pinpoint and manage with the help of a primary care manager, family, and friends. It’s also important to remember that a diagnosis of a disorder with tics isn’t the end of the world; we must remember that under the tics is still the individual, and that person is a beautiful creation of God who’s simply struggling with the burdens of life like the rest of us.

Do you have any information on tics that you’d like to share? What about questions? I’d love to hear your comments and questions, so please post them in the Comment Box below. Also, don’t forget that if you sign up for my weekly newsletter, you’ll get extra resources on neurological disorders, as well as a gift in thanks for signing up. Thanks for reading!

Why one size doesn’t fit all when it comes to ADHD

There’s often a pattern when it comes to the many different treatments of ADHD. Each one shows improvement in some children, but not in all. Each treatment needs to be carefully regulated by parents and pediatricians to make sure none of the treatments overlap in a way that could be dangerous to the child. Some of these treatments target specific symptoms of ADHD, but not the others.

These precautions, in conjunction with the different forms of ADHD, mean one thing: there is no one “cure” for ADHD because there is no one expression of ADHD. Each child’s treatment will depend on all sorts of factors such as:

  • Type of ADHD
  • Health
  • Allergies
  • Learning Style
  • Other Disabilities
  • Safety at Home
  • Good Nutrition

And this list is by no means exclusive. My point is that it’s not fair for parents to be judged for not trying a new “miracle cure.” The children I’ve worked with in different schools and in tutoring generally thrive under multiple sources of assistance. Some of the management strategies may surprise you, too. Most benefit from a mix of medication, a balanced diet, and these non-medical treatment sources:

  • Exercise – In the article, “Taking Away Recess Bad for ADHD Kids, Experts Say,” Thomas Lenz, an associate pharmacy professor at Creighton University in Omaha, Nebraska,  says that exercise and ADHD medications act on the brain in very similar ways. In addition, according to NOVA’s article, “The Science of Smart: A Surprising Way To Improve Executive Function,” exercise is one of the best ways to improve executive function struggles, a symptom most children with ADHD struggle with.
  • An Organized Home – Children with ADHD often struggle to pick up basic organizational skills and habits such as having one spot for homework or knowing how to follow a basic evening routine. ADDitude Magazine’s article, “Help Your ADHD Child Organize Homework,” stresses that it’s important for parents to work with their children to develop healthy organizational skills as they grow so they’re more prepared to carry those skills into the world with them.
  • Cognitive Behavioral Therapy (CBT) – CBT is often an effective treatment for individuals with OCD, but experts are finding that it can be helpful for children with ADHD as well. U.S. News Health’s article,  “Cognitive Behavioral Therapy Can Help With ADHD,” says, “CBT for children with ADHD is aimed largely at improving their behavior through praise and rewards that motivate them to calm down enough to cope with school or other challenges.” The article states that while CBT won’t cure ADHD, it helps children learn thinking and self-management skills. If mastered, these skills can last far beyond any medication.

Different Kids, Different Needs

Parenting a child with ADHD is not an easy task by any means. It’s time consuming all the time, and it takes a lot of trial and error. A certain diet and medication that works for one child will probably not work for the next. And on top of that, children’s dosages and treatments will need to constantly change as their bodies and brains grow.

If you’re the parent of a child with ADHD, don’t let people guilt you into only one form of management for your child. No matter how much they promise you “just need this one treatment,” odds are that your child will have his or her own needs that are mixed and multifaceted. The best you can do is try, and when one treatment doesn’t work, don’t consider yourself a failure. Simply move on to the next and know that you’re doing your best. Your attempts to meet your children’s needs will encourage his or her teachers and other supporting adults to do the same, and as a team, you’re giving your kiddo the best chance he’s got. And isn’t that what every parent wants?

Do you have experience with ADHD management? What are you thoughts on the issue? What was successful for your, or what wasn’t? Please share your thoughts in the Comment Box below. And don’t forget, you can sign up for my newsletter for extra resources on neurological disorders, education, and spiritual encouragement. As always, thanks for reading!