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Thread: Newly diagnosed with some questions

  1. #1

    Default Newly diagnosed with some questions

    My son is 8.5yrs old. Around the age of 6 he started throat clearing... not a lot, but everyday. The ENT did a sinus scan and it was normal. They did the camera down the nose thing in clinic and said he possibly has reflux. He went on a PPI for several months with no change. ENT talked about removing tonsils because they were quite large. He didnt want to remove them just because of the throat clearing, as it probably wouldnt help. He ended up with several strep infections in 2010 and tonsils were removed early 2011. No more strep since. The throat clearing continued but within the past 2 months it has become obnoxious. He also sniffs and takes a odd sounding breath before he throat clears, almost like a sigh or hum. He was doing this more than 50 times an hour. He is on the highest dose of allergy meds, he has allergies, and has been back on his PPI for a month. No change. We saw Neurology and he said it was vocal tics. He didnt want to dance around anything else. I was worried about Eosinophilic Esophagitis as my 7 yr old daughter has this and throat clearing can be a symptom in older kids. The Neuro put him on guanfacine. He has taken it for 4 days and I think we are seeing some improvement.

    My ? is... is this something he will just outgrow? Is he at more risk for Tourettes??

    Thanks
    Sarah

  2. #2
    Join Date
    Apr 2005
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    Ottawa, Canada
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    5,945

    Default Re: Newly diagnosed with some questions

    Hello Sarah and welcome to the Forum!

    Just to be clear, by PPI do you mean proton pump inhibitor?

    Is he at more risk for Tourettes??
    Based on your recounting of events, it sounds as though the neurologist made the diagnosis of Tourette and that Tenex (Guanfacine Hydrochloride) in an attempt to control tics, is that correct?

    If the diagnosis is indeed Tourette Syndrome, then in the usual course of Tourette, one sees a wax and wane of tic activity, with changes in intensity over time. In some people there appears to be somewhat of a remission, while in others tics remain lifelong.

    In those who remit, I've often wondered if they simply learn to suppress and redirect, making their tics less obvious.

    Four days experience may be a bit premature to form an opinion as to how he might tolerate the medication, and whether the remission is due to the medication or from his ability to temporarily suppress his tics.

    In any case, in the event he feels he cannot tolerate the medication due to side effects, check with the doctor on how to gradually withdraw the medication, as it is not recommended to withdraw it suddenly.

    How is the rest of the family dealing with your son's tic expressions around the house at this time?

  3. #3

    Default Re: Newly diagnosed with some questions

    I dont believe he said the word Tourettes. I think he talked about the fact that he didnt have any motor tics was good. I dont recall for sure. He handed me a handout on vocal tics and said we should try Medication since he is bothered by it. He has had 5 doses now and while they arent gone, and i dont ever expect them to be, they seem less intense.

    Yes by PPI I mean, reflux medication.

    We are doing okay here. We never make him feel bad about it. We try not to say much at all. He is a sensitive kiddo. I am very concered for school. I do not want him to be teased. I need to talk with his teacher this week and I am not sure what to say to her and how to deal with it.

    I am overwhelmed. Between my son and this diagnosis and my daughters EOE. She is 7 and on a feeding tube and has a few foods. We trial foods and every 10wks she has biopsies of her esophagus to see if there is damage from the food. There are days when this all can be too much for one mama.

  4. #4
    Join Date
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    Default Re: Newly diagnosed with some questions

    I dont believe he said the word Tourettes
    At some point, to assist in developing the right strategy for supporting your son, the neurologist's diagnosis should be clarified. It could be that your his doctor suspects transient tic disorder and will defer to a later follow up evaluation before making a final diagnosis, not at all unusual.

    You are correct in taking a pro active approach in speaking to his school, to perhaps including the principal in the discussion with the teacher. These days many school authorities have protocols in place to assist children with special needs and teachers are sometimes trained in dealing with disorders. If you happen to be in one of those districts, the teacher may have had previous experience working with a child with tic disorders.

    I believe you are in the U.S. and if so, contact the Tourette Syndrome Association for assistance with local resources and local support groups.

    Their website contains materials for dealing with schools as well, with guidelines for awareness in connection with legal rights for children with special needs.

    It sounds like you are working hard to provide your son with the support he needs, and by providing those with whom he comes in contact with information about his diagnosis, he should be able to integrate successfully.

    I do not want him to be teased
    If your son can explain in a clear concise manner that the sounds or movements he makes are involuntary, and are caused by a neurological disorder called Tourette Syndrome (if in fact this happens to be the diagnosis) it can help to avoid unnecessary conflict. Of course he should be encouraged to report any instances of teasing or bullying in the event it happens, so it can be dealt with at the proper level.

  5. #5

    Default Re: Newly diagnosed with some questions

    Hi there,
    My son is 10 years old and also deals with vocal tics, similar to what your son is dealing with. Started out with throat clearing when he was younger, and sometimes a repetitive cough that would last for 6 weeks despite the fact that he had no cold. We also went through various allergy and sinus tests. When he was 7 years old, he developed a vocal tic that was like a squeek or high pitched "hmm" sound, and it was then obvious that we were dealing with some kind of tic disorder. For us, it seems like the vocal tics are much more prominant. He has had very mild motor tics in the past...ie. eye blinking or a slight neck or jaw twitch, but they only seem to come on every 6 months or so, and usually only last 1-3 days and then completely go away.

    His vocal tics follow a very predictable wax and wane pattern.....he goes about 3 months mostly tic free, and then the vocal tics will suddenly appear and build up to a peak over a 6 week period and then once again slow down and almost disappear for 3 months. Due to the history of motor tics (although very few and far between), he is considered to have Tourette's. Oddly enough, his vocal tics always start when he is away from school ie. summer, Christmas break, Spring break.....Once school starts they get much better....he also has ADHD and I think his brain needs constant stimulation and structure.

    I can offer some advice with the teasing and school thing based on my own experience. There are likely parents who would prefer to keep the disorder a 'secret' but I am a huge advocate of be open and honest with people about it. Once people know they tend to be much more understanding. Explain his situation to his classmates, or ask the teacher to do it. Kids will really surprise you these days. In a world where kids are being diagnosed with ADHD and Autism left and right, kids these days don't find any disorder all that shocking or abnormal.

    Once we told my son's class, their attitude towards his tics changed dramatically. They became more patient and emphathetic, and also just learned to look past them. We have taught our son to be confident in explaining to anyone who may ask about his tics, and he has made many new friends in the process.....kids ask about them because they want to know why he is doing it, and he tells them about his disorder and then strikes up a conversation about Pokemon or Minecraft and suddenly he has a new friend.

    My son's attitude is "if someone doesn't like me simply because I make some noises...well, they aren't a person I would chose to be friends with anyway so it is no loss to me". We have been very fortunate because he has a wonderful group of friends who have been with him since Kindergarten (long before the tics started) and any one of those boys would defend him in a heartbeat.

    They never ever make an issue of it. Oddly enough, when we opened up to one of his closest friend's parents about his Tourette's, we found out that the boy's younger sister also has vocal tics and we never even knew! It is more common than you would think!

  6. #6
    Join Date
    Jul 2011
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    Toronto, Ontario
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    Default Re: Newly diagnosed with some questions

    Thanks Ann for your suggestions!
    I love your son's attitude: "if someone doesn't like me simply because I make some noises...well, they aren't a person I would chose to be friends with anyway so it is no loss to me".


    Sarah, it sounds to me that your son has not received a diagnosis for TS yet. Given the treatments he has received and the allergy meds he is already on, his "risk" for Tourette may not be that high. If the neurologist is diagnosing vocal tics, he may have a different tic disorder including just vocal tics without all the symptoms of TS, or Transient Tic Disorder (you can read more about this in this post on the Forum).

    Have you taken a look at the list of symptoms for TS? Is your son exhibiting symptoms other than the vocal tics?
    Tina, Forum Moderator, TSFC Staff Liaison

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  7. #7
    Join Date
    Jul 2011
    Location
    Georgia, USA
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    287

    Default Re: Newly diagnosed with some questions

    Sarah what part of the US do you live in? I'm in GA. I only ask because your story sounds very familiar to a lady I knew through my son's elementary school. My son is 10 and has TS.

  8. #8

    Default Re: Newly diagnosed with some questions

    We are in Wisconsin.

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