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What is your knowledge of it? Does your child has it? How did you get them diagnosed?


Asked by SAHMinIL2 at 11:34 AM on May. 3, 2010 in Kids' Health

Level 23 (15,584 Credits)
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Answers (7)
  • There is a group on Cafe Mom that has mothers of children with Tourettes Syndrome,, My friend has a child with it,,and he was diagnosed at age 3,,,if you think you child exhibits symptoms, please take him to his doctor ASAP,, there are so many therapies for it,, at the age of 13 my friend's son is almost symptom free now!

    Answer by kimigogo at 11:38 AM on May. 3, 2010

  • Thanks for the reply. It took nearly 8 years for me to finally get the doctors to take me seriously about my son's ITW (idiopathic toe walking). All I would get is he would "out grow it". Finally last summer the doctor took me serious regarding my 8 year old toe-walking. He was able to have surgery in Nov 2009 and has been recovering nicely. Seeing I had to go round and round over toe walking for 8 years, I doubt I would get the help I would need with tics. I've also read up on it some last night that in most cases with tourette the tics disappear, as if they out grow it, when the child hits puberty. (That was on medical sites). I'm sure the therapy is helpful, but I'm not sure at this point how much of that would have been as a result of therapy or the child's age. That's just based on what I read last night. Clearly I won't get help from our normal doctor I would have to see a specialist, but what kind??

    Answer by SAHMinIL2 at 11:47 AM on May. 3, 2010

  • Hi me again,, you need to go see a neurologist,,, My friends sons tics got worse at the onset of puberty,, it usually goes one way or another,, my husband is an orthotist and toe walking can also be a sign of OCD, and autism.. Is your son doing well in school? You didn't mention if your kiddo has vocal/ and or physical tics? I honestly would bypass the doc who didn't take the toe walking seriously and go straight to the pediatric neurologist. I hope it works out for you,, I will say a prayer for you and him!

    Answer by kimigogo at 11:54 AM on May. 3, 2010

  • Verbals just started about month or 2 ago; It's a humming, clearing throat type noise. I can't describe it. Heading jerking started about a year ago, then stopped for while, and came back shortly after surgery for the ITW. Prior to surgery he had EMG/NCV, MRI and other x-rays done by various doctors. That all came back normal. We homeschool, but I have our kids tested. He test above or at his grade level. He has no issues with this bookwork. Often he has the daily bookwork done or started before I even get up. He wake up early like 6 am and will often do the work before I even get up at 7 am. This is especially true when it comes to his math, graphing, and grammar workbooks. He just reads the page understands what to do and starts doing it. I do not have to give him instructions or examples. Or when I do I don't even finish the example, I get oh I get it now and off he goes to do his work. He is very much a self starter....

    Answer by SAHMinIL2 at 12:06 PM on May. 3, 2010

  • The reason I asked was mostly for social reasons,as you know kids can pick out differences really fast,,, I am not a doctor,, but in my experience,, I have 2 friends with children with Tourettes,,, and DH does alot of orthopedics for toe walking,, most are really advanced... I would say take him to the neuro. Keep a journal for 2 weeks before you go,, document,, when the tics occur my guess is that when put in new and or uncomfortable situations they increase...I had a really good friend who had Tourettes that was so mild,, he wasn't diagnosed until age 40--he had rapid eye blinking and head jerk in certain situations.. I suffered from epilepsy as a child,,and am so thankful that my parents finally got me help---I had really weird "spacey: moments,,almost like frozen in time, I fianlly had a grand mal seizure and got meds,, grew out of it now okay huggles to you momma!

    Answer by kimigogo at 12:52 PM on May. 3, 2010

  • He has had a few of his peers, older peers (4-5 year older then him), point out the head jerking. However it's NOT a totally negative thing. It was more of the lines of you just head jerk again, or they ask why do you do that it. I know those lines of questioning make him uneasy, but at the same time he's NOT being teased by it. He had MORE points and stares and negative reaction to his toe-walking then the head jerking and no one outside of my husband and I have said anything to him about the verbals. So even though it's being pointed out to him by his peers, in some cases, he's NOT being tease about it. They really are more interested in why he's doing it. They just want to know why he has that urge. He tells them I don't know and they drop it and just accept that's just something he does. If he was being teased I would know.....

    Answer by SAHMinIL2 at 1:06 PM on May. 3, 2010

  • My knowledge is very minimal on it, no one I know personally has it, but there is a group on here that you would want to check out, and I would suggest talking to your pedi about it, who would most likely refer you to a neurologist. Good luck!

    Answer by ethans_momma06 at 2:09 PM on May. 3, 2010