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Hello. 9yo Son with TS

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  • Hello. 9yo Son with TS

    Hello. Writing from Texas, and so grateful to have found what appears to be an active forum. Thank you for welcoming international members.

    My 9yo son is on the cusp of meeting TS criteria. By "cusp," I mean he is one week away from the year-long criteria. However, two neurologists have told me this is TS, and his symptoms are so severe, there is not really a shot that this will disappear in a week.

    DS started with eye rolls March 9, 2015. They came on pretty severely and were nearly constant for three days, then tapered off very quickly. They never went all the way away, but it wasn't a problem at all and we didn't even think of them any more. Everything was just fine. He was a very stereotypical boy.

    On Nov 14, 2015, DS started with a horribly intense coughing tic. It took 3 ER visits, an ENT, a pulmonologist, and finally a neurologist to label it as a tic. It was horrible for him; he coughed forcefully up to 40 times PER MINUTE for up to 4 hours at a time. After two weeks, the intensity went down by about 25% but the coughing became constant all day long and also waking him up from light stages of sleep for about another month. Intensity slowly tapered, but nothing ever went away. The tics impact him psychologically greatly and seem to take a lot of his energy---he can not emotionally/mentally tolerate even trying to go out of the house or do much of anything when they are bad. Any they are bad several times per week. At the same time as all of these vocals, he developed a foot tapping tic and a jaw stretch tic. He had a few other simple motor tics come and go briefly, but none of them lasted long. He started Guanfacine last November, and over time we increased to 3mg. He also started on Zoloft due to concurrent debilitating anxiety that developed, and I feel that is helping. About two weeks ago, his vocal tic changed up again and became a loud wail/cry sound. It would last all day for several days, then tapered to a more intermittent muh-muh-muh sound. It was decided the guanfacine wasn't working, and we switched to a clonidine patch.

    Last week, he developed a severe motor tic involving arching his back and neck, rolling his shoulder, and taking a deep inhalation all at the same time. He does this about every 5-10 seconds when it occurs. It is accompanied by severe pain. The worst day, he spent an hour screaming in pain and crying out, "make it stop." Since his vocals and eye tics can last from awakening until bedtime without pause on bad days, we were frightened that he may eventually experience this painful arching tic constantly as well. DS is at his wit's end, and he really has zero quality of life at this point. So we spoke to neurologist and started Haldol 1mg 3 days ago. This is not a medication we take lightly, and I'm frightened of the side effects. However, DS is at the point that the potential relief of painful and debilitating symptoms outweighs the side effects. Today he is very lethargic but not ticcing. We see the doctor tomorrow and I will see if we can try 0.5mg instead to decrease the lethargy

    I should mention he is seeing a psychologist and a pediatric neurologist. He also tried Topamax, but he developed difficulty speaking and formulating words, which is a known side effect of that medication.

    Want to try CBIT, but DS does not want to try it yet. I think he lacks the mental energy at this point. Also, I'm not sure how it would work for him because his tics are still morphing quite a bit. But, I did speak to him about it, and he said he did not want to try it at this time.

    There is very little support out there for TS, it seems. It's difficult to find other people who understand. Our lives were extremely typical and "normal" until less than 4 months ago. Everything has turned upside down since the severe tics started at that point. We do not have any known TS in either of our families, so this is all new. I've spent hours and hours reading and researching and I have a medical background, so I don't really have questions about TS. Just hoping to find a bit of support here.....

    I cling to the statistic that most people with TS have some degree of improvement in their symptoms as they get older. However, I guess those people don't post much on TS sites, because I only seem to find adults who are talking about unabated problematic symptoms. I'm trying to remain hopeful, but inside I'm terrified for my child's future.

  • #2
    Re: Hello. 9yo Son with TS

    Welcome to the Forum, dswm and thank you for joining us. Hope you might find the information and support you might need at what sounds like a very trying time for your son and your family.

    It also sounds like you have been doing all the right things in having your son treated by a number of specialists.

    Want to try CBIT, but DS does not want to try it yet. I think he lacks the mental energy at this point. Also, I'm not sure how it would work for him because his tics are still morphing quite a bit. But, I did speak to him about it, and he said he did not want to try it at this time.
    It could be your son, at his age of 9 might be a bit on the young side to benefit from CBIT, especially if he seems resistant. It might be worthwhile having his psychologist speak with him about cognitive therapy, to acquaint him with the concept.

    Our Forum contains a great deal of information on CBIT including these informative videos by Dr. Douglas Woods PhD, who just moved from Texas A&M. Dr. Woods is a leading authority on CBIT and the videos should give you a good understanding of how it works.

    Usually children aged 10 to 13 benefit and respond best to CBIT because at that age their sense of self awareness is sufficiently matured to respond to Habit Reversal techniques.

    Prior to that maturing of self awareness, a child is aware that s/he tics but not necessarily aware of when s/he tics or is about to tic. Recognition of premonitory urge is crucial to the success of HRT in CBIT.

    How is your family coping with the current situation?

    Are there specific concerns or questions you might have at this time?

    Have you been in contact with the Texas Chapter of the Tourette Association?
    TouretteLinks Forum


    • #3
      Re: Hello. 9yo Son with TS

      Hi Steve,


      Family is coping as best as can be expected, I suppose. We are fortunate to have my mother-in-law close by. We are trying to keep our daughter's non-TS life such that it is not overshadowed by DS's TS. It is a balance. I am also fortunate that I chose this year, before onset of son's severe symptoms, to quit working and stay home with the kids.

      Son is developing some ability to suppress his tics and recognition of urge. Before eye rolls he feels "pressure in his eyes," before vocals there is a "tickle in the throat." He can't identify an urge before the back arching though. A few times in the past couple of weeks when someone has been over to the house, he has told me that he is "holding back his tics." He still tics, but quite as much when other people are around. You can see how much energy it takes from him though.

      I do have a question about son's Haldol, but I will post it in the general forum.