March 9, 2017, 10:32 AM
New to This Forum
Hello, my name is Nia and I am new to joining this forum.
I have an 11 year old son, who we are learning to treat for his tourette's.
I would like to ask how some parent deal with their childrens severe Tics and what methods you found work.
We just started the block therapy and its still very new for us.
Also, my son takes a medication. I am seeing it get very severe and increase over the last few weeks.
March 9, 2017, 10:49 AM
Re: New to This Forum
Welcome to the Forum, Nia and thank you for joining us. I hope you will find the information and support you need to help your son manage his symptoms.
By "block therapy" do you mean your son is receiving Comprehensive Behavior Intervention for Tics (CBIT), which includes applying a Competing Response (CR) sometimes called a "tic blocker"? Information on CBIT HERE
What medication(s) has your son been prescribed? Any over the counter / alternative / non prescribed remedies?
Has your son been diagnosed with any associated disorders in addition to his Tourette diagnosis?
When was he diagnosed? How long has he had symptoms?
Is he being followed by a physician for his prescriptions along with a psychologist for the behavior therapy, or is it just one practitioner doing both?
How is your son doing at school.... academically, socially and with his symptoms? Is your son interested in activities like sports, cultural pursuits like art, music etc? Hobbies?
How do his tic symptoms affect life at home with other family members?
Your answers to these questions will help in providing helpful insights into your son's situation so that we may be able to offer insights and suggestions for your consideration.
March 9, 2017, 10:55 AM
Re: New to This Forum
yes, he just started the CBIT(block therapy)
He was diagnosed almost 2 years ago, he also has ADHD, Anxiety, ASD(high functioning)
He sees a tourette's specialist(DR) and a psychologist, as well as psychotherapist.
His Pediatrician follows him for the medication. He takes 2 medications-byphentin for the adhd, and Clonidine for the tourette's
I am seeing a drastic change in the last few weeks, severe and violent tics including vocal, muscular, hair pulling, finger biting, and head smacking.
I am very concerned and it is very hard to watch and hear(loud vocal noises). He is having difficulty in school and is often anxious and crying. He gets very emotional and is having a hard time completing his work in class and following along. Socially, he does like some sports, and is enrolled in Scouts, however lately doenst want to do much due to the Tics and feels very isolated. I have a followup appt with his specialist next week to bring all of this up...
March 9, 2017, 11:26 AM
Re: New to This Forum
Thank you for the additional information, Nia!
Are there three or four clinicians involved in your son's treatment? Is his pediatrician the Tourette specialist or are they separate doctors? Is the Tourette specialist (if separate) a neurologist, psychiatrist? How does the psychotherapist fit into the picture?
Sorry for the all the questions, but it will help form an accurate picture of your son's situation.
Is there coordination and communication among his various practitioners?
Has there ever been any discussion about re-assessing the effectiveness and current status of the Biphentin/ Clonidine combination?
This is a significant development, if it represents a change in behavior in the past few weeks. A review of what factors may have changed in your son's life in recent weeks that might have affected his symptoms.
Consider changes in medications and or dosages, modifications in his school or home environment.
As you may know, while Tourette tics are neurological and involuntary, the tics are influenced by environmental factors, both internal and external.
Examples of internal factors would include anxiety, fatigue, stress, excitement. External factors would include people, places or situations that tend to exacerbate tics in a predictable way. The environment does not cause tics, as Tourette tics are involuntary, but the environment can influence tics, both positively and negatively.
There is no universal standard for what factors trigger tics for any given individual, so your son's therapist would interview and assess your son's particular tic triggers in order to provide strategies to address those triggers. What might increase tics for one person with Tourette, may not affect another's tics, while the same factor may lessen yet another's tics.
Strategies to manage internal factors would include such things as learning relaxation techniques, improvement of sleep hygiene, dietary modifications such as reduction in caffeine and sugars. External factors can be managed by mitigating those situations either by avoiding them, finding ways to lessen their influence through education, awareness etc, or learning ways to lessen their impact.
These strategies can be learned with the assistance and counseling of his CBIT therapist, perhaps working in consultation with his psychotherapist.
How many CBIT sessions has your son had to date?
March 9, 2017, 12:02 PM
Re: New to This Forum
his pediatrician has prescribed the byphentin, his neuro development DR prescribed the clonidine. They are both aware of the medications they have given him.
The psychologist is working on the CBIT(we have had 4 sessions so far)
The psychotherapist for behaviour therapy. We have taken a break with her , right now to try to focus on the tics as it was too much for him.
The only thing we have changed was we had taken him off the byphentin for a month or so, to see if that made the tics less as it can cause them to increase.
We saw a bit of a change, but then the school situation became worse, so I started to give him the dose again.
I do think that we need to review the medications as i am concerned they may not be effective any more. The school has stated they don't see any change since he started back with the byphentin.
March 9, 2017, 12:29 PM
Re: New to This Forum
Presumably by session 4, there would have been discussion about what situations and factors tend to trigger tic activity in your son. Have you been able to make any changes in his environment to help mitigate his tric triggers?
You mentioned earlier that there was some "tic blocking" therapy being provided. Which of your son's tics has been targeted for a competing response and how is it going for him to implement his tic blocker?
Is your son receiving good support and positive reinforcement from family members in the implementation of his competing response?
You also mentioned your son's diagnosis of anxiety; what if any treatment plan or strategy has been recommended to help him manage his anxiety?
March 17, 2017, 12:47 PM
Re: New to This Forum
Welcome to the forum, Nia, I'm so glad you found us. My son is almost 14 and was diagnosed with TS at age 10. He also has ADHD, OCD and anxiety. What we've found helpful for him is a combination of medication, treatment, and certain management techniques. I won't say they've resolved all his symptoms, but they have helped a lot, when I compare back.
Every child is different, and I doubt anyone will ever find a one-size-fits-all approach that would work for all children! That said, I will share some information about what has helped my son.
- Guanfacine (Tenex), not the extended release version (several TS experts told us they have not had good results with the extended release, or "Intuniv"): 4 mg per day in several divided doses
- Ativan: 0.5 mg per day, in several divided doses: we were told that adults are sometimes prescribed to take this on an as-needed basis, but that in children it can be helpful to give small doses on a schedule (note we have to break the tablets up into little pieces in order to do the divided doses; we can also give a whole tablet during the night for insomnia if needed
- Melatonin: 3 mg at bedtime, and again during the night as needed for insomnia
- Zaleplon ("Sonata"): 5 mg as needed during the night as needed for insomnia
As you may be guessing by now, insomnia is one of the main places "where the shoe pinches" for my son.
We have worked a little bit with habit reversal. When we got the diagnosis, I felt that my son was not old enough to do it formally, but we gave it a try on our own. I started by explaining TS in brief to him, and mentioning a couple of examples of some of his tics, so he could get an idea what TS was about. Then I said, "There's a way of eliminating a tic that's bothering you, that we could work on together, if you want to. Is there a tic that's bothering you that you'd like to work on?" He said yes, there was one he wanted to be able to get more control over. He chose the following tic to work on: He was repeatedly scraping his teeth over the skin below his lower lip. This was damaging his skin and when he tried to practice his beloved trombone, he cried after a few minutes because it hurt. The replacement behavior we chose was to purse his lips instead of doing the scraping thing. By pursing, I mean gently turning the lips inward. Whenever I saw his upper teeth starting to come out to start the scraping, I would look purposefully at him (meaning, I looked him in the eye and raised my eyebrows a bit), or gently touch his leg or arm, and purse my lips. This was something I could do in public without embarrassing him, because I didn't need to say anything.
We had good results with this, and as time went on, my son had several good experiences creating a replacement movement for a tic that was causing him discomfort, for example when he started doing a head roll that gave him a headache by the end of the day, he invented a modified version that still gave him the satisfaction but didn't bring on a headache. He is currently working on a knee tic. He often doesn't realize he's doing it when it happens. But he's motivated to do something about it because by the end of the day, if he has done the knee tic a lot, it hurts quite a bit. We bought some knee pads used by volleyball and basketball players, and currently, we're experimenting to see if putting the knee pad on, and having the awareness that the knee pad is on, will help him increase his awareness of the tic.
His work with his therapist has focused more on his ADHD and OCD symptoms than on his tics. My son tends to have vocal tics that get on people's nerves, but since my philosophy is to allow my son, as much as possible, to decide which, if any, tics to reduce or eliminate, the challenge for me, and for the rest of our family, has been to work on increasing our tolerance for noise and interruptions. Of course, when my son wants help with reducing or eliminating a tic, I am always happy to help. The only area where I take more initiative is with coprolalia. There, as soon as I hear a new coprolalia tic, I request that he explore possible substitute phrases, and make suggestions of my own if needed. However, when I hear a lot of coprolalia, it's generally at a time when he is tired, frustrated or overexcited, and so what I mainly do at that point is try to reduce the tension in the room (e.g. ask his brother to step out), and think in terms of everybody getting a bit more sleep each night for the next few days.
So, that's a bit of information about our experiences. Reading over your posts, I had a couple of reactions:
- When there's a dramatic change in my son's behavior or feelings, I like to inform his providers, to keep them in the loop.
- When I have a question about possible side effects of a medication, or about timing and dosage, I like to phone a good pharmacist and ask questions, to get more information about the medication.
- We have seen that sometimes a provider or an educator inadvertently triggers an increase in symptoms. When I suspect that may be happening, I will sometimes request that a couple of sessions be skipped, to give me time to figure out what's going on. For example, I might send an email along these lines: "my son has a lot going on this week, and as part of a general stress reduction effort, could he skip this week's session and next?" Or I might arrange to come into the next session with him, to observe. We have unfortunately worked with some providers (e.g. a social worker, an occupational therapist) who were trying to make the TS go away, and the child, being a child, had a hard time articulating that what the therapist was asking him to do was not reasonable. Sometimes I've been able to give the therapist more information about TS and about the child, with good results; but sometimes I've had to stop the therapy or the in-school services.
Of course, tics come and go, and severity can change over time, completely independently from anything that's going on in the child's environment. But I'll give you an example from a few years ago. To set the scene: my son has been going to weekly appointments with a social worker for a few months. Recently he has not been looking forward to going. I ask the therapist if I can come into the next appointment with him so I can support him better at home. On our way into her office, my son expresses a vocal tic that sounds like an insult directed at me. He and I both know that this is his way of expressing appreciation to me for coming into the appointment with him, but she doesn't know that. She scolds him and says, "That's no way to speak to your mother." She says it in a gentle way. I tell her, "You didn't know this -- but the phrase he just said is one of his tics." She, unfortunately, still doesn't get it, and does some more scolding. After the appointment, I sent her a short article that I hoped would help her get more of a handle on TS, but I'm not sure she read it. Unfortunately, more things happened like that, and I decided to look for a different therapist.
I hope you'll keep us posted!