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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.

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7 Comments

  1. Hi I have never answered anything like this before but I am desperate for some help and support. My Son is 4 will be 5 in July and since he was about 2 he has displayed what I would describe as motor tics. He would hand and arm flap when he was excited or very hyperactive. If we went anywhere and it was out of his routine he would exhibit these tics as well. I took him to the doctors regarding his behaviour and they referred us to a Paediatrician because they thought he has ADHD. He is now 4 and we are still awaiting diagnosis of the ADHD and they are also questioning that he has a form of Autism as well. With regards to his tics he has escalated from motor to vocal. He started screaming just a random high pitch scream when he became hyperactive, scared, excited, agitated and these would happen at home and in public. Recently he has changed the vocal noise and he now clucks like a chicken. He started doing this more at school and he has been told off by his teachers because he is distracting the class. When I explained that it is possible that all of this is linked with the ADHD and the paediatrician will refer to a neurologist for ?Tourettes diagnosis as well as the other listed above the school said that they will discipline until he is formally diagnosed. When I picked him up from school one day he was in such a state that when he got home he clicked like a chicken for over an hour before collapsing with exhaustion. His behaviour is horrific.
    Any help or advice would be very welcome to help us while we are awaiting assessments and disgnosis so we can support him.

  2. I wish I saw this earlier. My son has the EXACT same diagnosis as yours, onset also at age 3, although his OCD and ADHD issues came earlier. We just started medication for fourth grade and while it isn’t a complete fix, we are managing. My son’s grades have improved to all A’s and B’s and his behavior has gone from horrific to average. The only thing I notice is that his self esteem is suffering, but we go to weekly CBT and she is trying to help with that, and his dad and I give him lots of praise. It is very hard to decide these things-we held out for a long time, but the medicine was the right decision for our son. Good luck!

  3. I have a daughter 8 and a son 11 with a mirrored story of yours! We had a DNA swab do e to determine which meds would and wouldn’t work. Basically after trying many things we four d it impossimple to treat all 3 the adhd, ocd, and tourettes. I am 31 years old and have the same diagnosis. My only cure was yoga about 5 times a week to start out and a lot of exercise. So, I have just decided I must try this with the kids, as well. Meditation. Yoga. It just has to be the answer. …. It can take a while im sure to get the benefits. But all we have is time. Good luck and please consider private yoga possibly with a teacher whom is also a certified counselor.

  4. I could’ve written this exact post – even down to the travel hockey. My son is ten going on eleven and in fourth grade was when things started to really spiral downhill. I even tried acupuncture out of desperation. He was on straterra for a while but them when we increased to dosage he had a terrible side effect of panic attacks which we were paralyzing for him. The OCD has also been very tough for him this year and we put him on Luvox which made the OCD go into remission with very little side effects. The problem is his ADHD is so severe that it is really impacting everything and the medicines for ADHD, OCD, and TS do not seem to work together very well. I’m so frustrated for my son. Does anyone have any success stories to share? I’ve just been referred by my neurologist to movement disorder specialists in DC. I would love to hear directly from the mom who originally posted this to see how it is going with her son. There are so many layers to this complicated diagnosis and nobody understands who hasn’t gone through it themselves. Feel free to contact me at cawidener@me.com

  5. I agree with John McCormick about the medications. My daughter went through so many before the found (what we call) the miracle one! Most medications made her foggy and sleepy. Then she tried ORAP and finally she had barely any TICS and no sleepy side affects. I believe that you have to really try the meds until you find the right one, or combination of different ones, until you see improvement. I can say that the SLEEPY side affect is hard to handle, especially when they are going to school everyday. Some meds made my daughter so tired, she would fall asleep in public (like when we would go shopping at the mall, she would have to sit down and next thing she was asleep). If you weigh out the SEVERE SLEEPY with the MILD SLEEPY, the MILD SLEEPY doesn’t seem that bad.

  6. I really think medication gets a worse rap than it deserves. Sure, all drugs have side effects, but you can always evaluate their impact together once he has started them and then quit them if the side effects are worse than the disorder was (which is the real question, not if they’re bad, but if they’re worse). I am a college student with Tourette, and I can credit my medication with giving me back some semblance of a life. It’s not perfect, and it may not be for everyone, but it’s worth a shot if the going is tough.

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