Saturday, June 21, 2014

My Son's Battle with Tics



A year ago, we discovered that our son had Tics.  For those who are unfamiliar with this disorder, Tics are defined as "a sudden, repetitive, motor movement with numerous successive occurrences."  In my son's case, his Tics involved blinking his eyes multiple times and twitching his mouth.  They are generally considered to occur in some people in times of stress, anxiety or excitability.  There is also a correlation between kids with ADHD and Tics. 

We first noticed my sons Tics during our trip to Disney.  Initially, we thought it was something he was doing on purpose and we asked him to stop!  Then I realized it wasn't intentional and I became quite worried.  I thought maybe it was a mistake to bring him to Disney World.  I even became annoyed with Disney for making the whole experience over stimulating. It's not just amusement rides anymore.  They now have rides with extremely loud music, 3D images and pyrotechnics.  I'm an adult and my nerves were tattered! 

However, when we brought him home the Tics didn't go away and my concern grew.  We took him to his Pediatrician who diagnosed him with Asperger's without any formal testing.  She even recommended medication. When I told her that I wasn't comfortable administering drugs to my 8 year old, she said I was "narrow-minded".  Nonetheless, I went forward with a Neuro-Phych evaluation and it turned out that he did not have Asperger's!  They didn't even understand why his Pediatrician would consider it as a diagnosis for there were no apparent signs or symptoms of that syndrome.  They did say that he had a mild form of ADHD but the primary area of concern was Anxiety.  They recommended therapy and Behavioral Modification.  Therefore, we found a great therapist in town and within a few months his Tics went away.

A year later, however, his Tics were back and they were exceedingly worse!  Not only did his eye's blink but they also rolled back, then he would open his mouth wide and it would twitch constantly.  This pattern would repeat multiple times every hour.  I was terrified!  I immediately made an appointment with a Neurologist.  They were so booked that we had to wait a few months to see him. In the meantime I began to do some research.  If you search for "Children with Tic's" on the web there are countless posts from frightened parents. People blamed this syndrome on everything; high fructose corn syrup, gluten, the strep virus, video games and TV.

In regards to my own child, I started to notice a pattern.  For one, this happened exactly a year later after the first episode.  It was November; a week after Halloween and his birthday party.  I wondered if sugar was the culprit.  I immediately threw away the last of the Halloween candy and any desert like food in our cabinets.  The Tics did not go away. 

Then I considered that it was the Strep virus.  We all had it just a few months ago.  Suddenly, I remembered a segment on the Today show years ago about how a boy who contracted Strep, the infection went to his brain and cause Tics.  I called the doctor to demand that they put him on antibiotics immediately but they dismissed the idea and me as some crazed parent.  I knew they were right. I was acting irrational!  Therefore, I began documenting his Tics.  I wrote when they happened, what he ate and what he was doing when they occurred.

Finally, a month later, we had our appointment with the Neurologist.  I thought, for certain, that he would somehow make this go away.  Unfortunately, my appointment only last 15minutes during which he did not listen to one thing I said.  Instead he hastily threw out a diagnosis of Tourette's syndrome, spent the remainder of our appointment researching drugs on his computer and informed me of the various reactions to each one!  I told him that I wasn't about to put my son on drugs until I got a second opinion.  Once again, I was called "narrow-minded".  Needless to say, I left that office angry.

It was now January and I was no closer to helping my son.  Furthermore, during the holidays I had to endure nosy relatives asking me if there was something wrong with his eyes.  I blatantly ignored them. 

I booked another appointment with a Neurologist in Boston and continued documenting his Tics every day.  I did notice that his Tics were worse while he played 3-D video games.  They also flared up when he ate any sweets.  I began limiting video games to one hour a week and restricted his sugar in-take.  Also, during this time, he was having trouble with Bullies at school. 

The day we saw the Neurologist in Boston was wonderful!  We made it into a family event.  My husband took the day off and we kept both kids home from school.  We drove in early so we could enjoy lunch in the city and after the appointment we planned to go to the Children's Museum.  Even my son was excited. 

The experience with the Neurologist in Boston was completely different.  For one, the doctor spent over an hour questioning us, evaluating my son and assessing the situation.  He came to the conclusion that he did NOT have Tourette's (or Asperger's for that matter) but that his Tics were caused by Anxiety.  He also confirmed that there are other triggers, such as, sugary foods, excitability, 3-D video games and theses triggers are different for everyone.  He told us not to worry about it, that he most likely will grow out of it and he recommended that we continue therapy. 

It is now June and his Tics are almost gone.  They tend to come and go with various triggers.  It is definitely worse during stressful times but I have noticed his diet plays a big role.  I now have him on a 90% Gluten Free diet and I limit sweets.  I also limit video games because that is a trigger too.  Additionally, we learned that he had a vitamin D deficiency so we give him a supplement.  Plus, I discovered a few Homeopathic remedies:


Tic Tamer by Native Remedies

Triple Complex Calm Tonic by Native Remedies

Liquid Calcium Magnesium by Tropical Oasis

I give him the Tic Tamer and Triple Complex Calm Tonic twice a day and the Liquid Calcium Magnesium once a day.  I also try to push liquids because I noticed dehydration is also a trigger. 

Dealing with a Tic disorder is frightening, for the child and the parent.  I hope that this article helps any parent out there that is now dealing with this issue.  Please feel free to leave a comment if you have any questions.  I'd be happy to help and listen.

Copyright by Michelle Fiore




11 comments:

  1. Hey Michelle,
    I love these articles. Would you consider writing one on adhd and parenting, even your experiences with the medical establishment while having a son with adhd...

    There is not enough out there on how difficult it can be to get the right diagnosis and treatment, and doing so efficiently and without judgement.

    Your style is easy to read.

    ReplyDelete
  2. Hey Michelle,
    I love these articles. Would you consider writing one on adhd and parenting, even your experiences with the medical establishment while having a son with adhd...

    There is not enough out there on how difficult it can be to get the right diagnosis and treatment, and doing so efficiently and without judgement.

    Your style is easy to read.

    ReplyDelete
  3. Hi Michelle,
    Great article.

    I see you have had your hands full. And Sorry to hear of the difficulties with the professionals.

    A thought for your readers, given my experiences and research while working with people who have ADHD, tics and accompanying challenges.

    Doing a "full nutrition panel" through the PCP. You may have done this. Nearly always with ADHD and tics is the need for extra vitamin D, and too Magnesium and Zink.

    Also, (and again not a pleasant sounding option...) if issues continue to prevail readers may consider medical treatment for mood disorders eg Lamictal, Depakote, etc.

    Tics and mood disorders often overlap. A full diagnosis for a mood disorder may or may not be there. The treatment can help with subclinical issues at times.

    Look for unexplainable incidences of up and down melancholy, anxiety, and or hyperactivity.

    Your son is quite lucky!

    ReplyDelete
  4. Hi Michelle,
    Great article.

    I see you have had your hands full. And Sorry to hear of the difficulties with the professionals.

    A thought for your readers, given my experiences and research while working with people who have ADHD, tics and accompanying challenges.

    Doing a "full nutrition panel" through the PCP. You may have done this. Nearly always with ADHD and tics is the need for extra vitamin D, and too Magnesium and Zink.

    Also, (and again not a pleasant sounding option...) if issues continue to prevail readers may consider medical treatment for mood disorders eg Lamictal, Depakote, etc.

    Tics and mood disorders often overlap. A full diagnosis for a mood disorder may or may not be there. The treatment can help with subclinical issues at times.

    Look for unexplainable incidences of up and down melancholy, anxiety, and or hyperactivity.

    Your son is quite lucky!

    ReplyDelete
  5. Can you tell me how much of the Tropical Oasis you give your son?

    ReplyDelete
    Replies
    1. Hi Carrie,
      I stopped using Tropical Oasis about a year ago but I believe it was 1/2 a cap full. You can contact the company and they will tell you the proper dosage for your child. I can tell you that since I wrote this article, his Tics come and go. The things that trigger them are sugar in his diet (which also means bread, rice and honey as well as dessert type food) and anxiety. Exercise has helped with both triggers. It eases his anxiety and works off the excess energy from the sugar. I tried to keep him on a strict diet but discovered he was sneaking food on the sly and I thought that habit would end up triggering an eating disorder. Therefore, we eased up on his diet and allowed him sugary foods at parties and classroom functions.

      Delete
    2. Thank you so much for your information. I greatly appreciate it. Was there any reason you stopped using Tropical Oasis? I heard many good things but if there is anything else that might be useful to know, I'm all ears! :)

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    3. Hi Carrie,
      We stopped using Tropical Oasis because it stopped working. My best advice to you would be to keep a journal of when your child is experiencing tics to try to figure out what is triggering them. Research shows that it is different for everyone. Some people are sensitive to certain foods or certain chemicals in the environment. I read one article where a child was sensitive to the carpet cleaner they were using in his school during winter break. Also, check out the Feingold diet. This diet is usually recommended for kids with ADHD but it has been proven to help with Tic's as well. Dr. Feingold believed that the chemicals in our food are causing neurological problems. There are also certain fruits and vegetables that have also been shown to be problematic. His book and diet is definitely worth checking out. Please feel free to post and questions on my blog. I know how scary this can be and I'd like to help anyone going through this.

      Delete
    4. Thank you, Michelle. We see an increase in tics every May/June. Then they usually disappear when school is out. I will begin keeping a journal as well. Thank you for all of your advice. I will be looking into it.

      Delete
    5. Thank you, Michelle. We see an increase in tics every May/June. Then they usually disappear when school is out. I will begin keeping a journal as well. Thank you for all of your advice. I will be looking into it.

      Delete