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TS is the answer?

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  • TS is the answer?

    So I am here and never thought this is were I would be.

    History of son in some short form:

    He was never easy and I kept asking the Pediatrician about him crying so much? Was told some kids cry more!

    2 years old son was diagnosed with SPD (then called Sensory Dysfunction) after a team evaluated him for autism.

    Then everything was easy just SPD and maybe some mild anxiety

    Son is gifted in some areas and learned to read starting at 3 years old

    If I had to say if I ever noticed ticks there was some eye blinking at 5 years. We thought was due to allergies from Metamucil cookies (for constipation)

    Fast forward we had never had issues but kept son in private small class rooms schools because of his SPD

    We had moved a few times due to hubbies job.

    Son started private school in KY for 4th grade and was just doing fine. Some anxiety and a very cautioned child. Starting 5th grade (same teacher) is when it all started snowballing. We noticed ticks and our calm focused child became unorganized and fidgety.

    The teacher ask us what happened over the summer and we had no answer. We went to the clinic and were told puberty and ticks are normal.

    We thought his SPD is acting up with the new classroom and more kids. Back at the Dr. office we were told over and over ticks are normal.

    At this point son ticked all the time. Nervous lip biting and more. His anxiety levels rose too.

    Yet again we ask the Dr and were got the ADHD answer! Meds would help (I refused)

    We moved again last summer to MD and I picked a great school district. I though he may have a little anxiety starting at a public school and middle school and big classrooms etc. He is overall a very well liked child.

    The school called and he was noticed for his fidgety unorganized behavior. Here I am setting up a new SPD evaluation.

    But his new pediatrician and school recommended a neurology/psychology evaluation .

    Fast forward here I am done some testing and on the waiting list for some more.

    The Dr. Singer at John Hopkins has diagnosed my child with TS.

    Co morbid
    Anxiety disorder (I had no clue I thought it was SPD was the culprit most of the time)
    Low Executive functioning (my smart child forgot how to do math and so much more)
    SPD (what the evaluation was great he has improved in most areas specially the coordination)
    Migraines ( he throws up when overstimulated)

    We are on the waiting list at Kennedy Krieger for an autism/language evaluation and sleep study.

    This is a lot to take in and we had 2 Therapy visits so far.

    But at this point the ticks are least of our worries rather the Executive function and anxiety.

    Ticks are:
    Mouth pulling and throat clearing mostly. Lip biting. Some shoulder shrugs and newly head rolling. I noticed him saying he wants to adjust/crack his back and started arching since it feels good.I knew that many kids with TS have co morbid SPD but that is about it.

    I am here to learn and hear from others to better help my son and understand.

    What I have trouble with understanding how can he go from this focused well adjusted kid to a mess so to speak ?

    He is almost 12 years.
    Last edited by mutter; December 2, 2012, 02:15 PM.

  • #2
    Re: TS is the answer ?

    Welcome! I know it is hard for you right now and you have come to the right place. Did the Dr.'s ever give a strep test? Just to rule out PANS (PANDAS)? TS is comorbid with OCD, ADD, ODD, SPD, anxiety, depression, and bipolar. When these comorbidities exist it helps to dx as TS and not something else. Did your son ever lick his hands when he felt that he had touched something dirty? Did he ever obsesse over his things? For example collect or want the same item in multiples? My son had about 20 Cars Lightning McQueens because when 1 would get a scratch that I couldn't really see he would freakout and demand a new one. My son is an only child and I was an orphan that never grew up around other kids to know what was "normal" and there were no Moms or Grandmoms to say "oh you did that when you were young." So when my son started ticcing at age 8 it was so hard. I hadn't had 8 yrs to adjust or accept it was all of a sudden but now looking back there were little things that were odd.

    Basically there is no cure for TS and no test to confirm a TS gene. It tends to run in families but some cases are so mild no one ever knew it. I had severe OCD as a kid. I would tap on things in 3's to turn off cameras. I still have OCD and compulsively wash my hands and I have some SPD. I had everything my son has but the vocal tics. I did have 2 bouts of swearing when I was a kid that I didn't know why I had done it and I used to meow like a cat all the time but basically my stuff was so mild when compared to my son. I did suck my thumb until I was 21 Our brains are developing until we are about 25. There is alot of time to develop coping skills. I have a great tip sheet for executive dysfunction I got from Parkaire Consultants in ATL Ga if you want I can mail or fax it to you. Send me a private msg./email w/contact info


    • #3
      Re: TS is the answer?

      Oh yea I forgot to add Dyslexia and Stuttering to that list of comorbid associated family genetic disorders. Queen Elizabeth 2 father stuttered and her childhood nanny said QE 2 had ocd behavior as a child. She would get out of bed several times during the night and align her shoes perfectly under a chair and place a napkin over them. I'm guessing she wanted to make sure there were no spiders crawling into them. Rechecking things.


      • #4
        Re: TS is the answer?

        Thank for the reply. Dr Singer is an expert on Movement disorders at Johns Hopkins

        I never remember having Strep ever (have not even heard of it until a few years back) nor did son (they do the test as soon kids get sick in the US)
        I guess you ask about OCD? I would say son has a little but not much.

        Perhaps I have some OCD but nothing major either. Like my house organized and clean.
        I know it is genetic and I assume my Dad may have it. Rage would certainly be his co morbid disorder. I do never talk to him.
        Son still is going to have a sleep study done.

        So far the ticks are not much of a worry (he does hardly ever get teased about it) but I see him more and more trying to adjust his back claiming it feels good. That one is scary. He has done it very little, but it may be just like his head started. Jut a little roll here and there and him claiming it feels good. Now it is a more permanent, more often thing.

        I really can not understand why with the onset of the ticks we also had a decline in executive functions and a rise in anxiety.
        I never had any academicals worries, far from it.Hhe was in gifted classes. Now he is unorganized, forgetful and just can't remember anything.
        We will have a 504 meeting in 2 weeks and he get’s accommodations.

        I went form a gifted calm quiet child to a fidgety boy with learning disability.

        I am not certain if he noticed all the changes or he may just not tell me much about how he feels. We talk and I have to be careful not to trigger any anxieties.
        My kid has no temper or rage.

        My question is: Could that still come? I would not know what to do then?
        Last edited by mutter; December 3, 2012, 07:22 PM.


        • #5
          Re: TS is the answer?

          Did he take any over the counter meds before all this started? Like childrens advil? My son took some childrens advil and started ticcing much more than normal but the Dr.'s said TS waxes and wanes. He took OTC childrens grape advil because he got a canker sore in his mouth but the Dr.'s say that when TS kids are sick they tic more. We do not give any kind of meds now and try our very best to keep to an organic diet w/no chemicals at all. I believe it helps but Dr.'s say there is no evidence. I can tell you the learning profile for TS is strong in the Lang. Arts and alot are very musical and play music. My son is not very good in math and has a problem w/working memory. All other subjects are 3 grades above his age level.


          • #6
            Re: TS is the answer?

            Son is one of the healthiest kids otherwise. Never really get's sick. I can hardly remember giving him anything. I am from Germany we do like our natural remedies. He does so just now diagnosed have migraines. We thought he get's overstimulated with the SPD (trigger) he throws up. But he has migraines. I have always stayed away from food color.
            Interesting about the learning profile. Son is Ok in math lang.arts specially creative writing he is way beyond.
            Son was 6 years when he asked to get a drum set. I was not happy my dad is actually a drummer and I do not want son to be anything like him. Not that they ever got to know each other. But this was the only instrument I did not want my kid to play. So I told him"If you still want drums on your 7th Birthday (that was 10 month out) then that is your present and your party and you take lessons!
            We still had a small suprise party (he gave up his party for drum lessons). He played ever since and now at middle school is also precussionist.
            Many teachers tell me he is quiet good! We invested in a pro electric drum set this summer before we moved (we knew we are going into a townhouse with the next move).
            Since he had coordination weakness (not anymore) with his SPD I had signed him up for dance classes. There was no OT back then, where we lived who knew anything about SPD. First when he was 2 he went for some movement class and later he actually got a few 1st prices for a Tap routine. He stopped dancing when we had moved again. We could not find a school that was a fit. Also he was older and he did not want to be the only boy at class there. Then he started Tae Kwon Do and this was god send for his confidence. The master was perfect and he made black belt. Now here in MD (we moved again) his new master is not so good we are in process of finding a new school.Moving does not make things easy but I always found something fitting for son. This last move was perfect for us since now we have all the experts in reach.
            We would not have the TS diagnoses and our kid would have been put on meds for ADHD (I refused those) which he does not have and for executive function there are no meds.
            Last edited by mutter; December 4, 2012, 08:00 AM.