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3 year old up every night for hours w/tics any input??

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  • 3 year old up every night for hours w/tics any input??

    On Dec 12th our 3 year old daughter had just awoken from a nap and we all sat down to eat. During dinner she started what we thought was a seizure eye blinking, facial grimacing, head jerk, ear to the shrugged shoulder and pinched fingers. It stopped her in mid sentence and then after it was over she sort of swallowed a couple of times and said "I love you" almost like a cover up for what had happened. Prior to this we had never seen anything like it from her. She has always liked to tippy toe walk and does show a lot of expression using her face. She is high strung but so far no Doctors think she shows ADD or ADHD symptoms. Since the 12th she has had 2 EEG's that were sleep deprived a one hour and a 4 hour with video. She had some of the events during each and both EEG's came back as normal. She had blood taken and everything came back normal (heavy metals, strep, diabetes)These events seem to happen only during down time. When sleeping (2 to 3 hours at night) eating, quiet time and in her car seat. We can talk to her and most of the
    time bring her out of it but do need to touch her to bring her around sometimes. My question is does this sound similar to anyone elses onset of TS? I didn't think it started this early and we have no history of it in our families. Plus night time seems to be the toughest time where the eye blinking is keeping her awake. We video taped a few events and every Dr. that seems them asks if TS runs in the family as their first question. There is no rythm to the movements but at night she is so tired and does get frustrated. Neurologist gave us Klonopin/Clonazepam to give her at night if it starts up and last longer than a half hour. Can anyone offer any advice/hope to lead us into a direction to find answers. Thank you so much - Worried Mom

  • #2
    3 year old up every night for hours w/tics any input??

    Welcome to the TSFC forum. I am glad you found us.

    Has your daughter seen a pediatric neurologist? Has anyone considered TS as a possibility?

    If TS is truly a consideration, you should be referred to someone that specializes in TS or other disorders.

    Family history is not always an indicator. In our case no one had TS to anyone's knowledge nor symptoms of but then years ago I do not think that TS was as commonly understood.

    What you are describing could be consider tics but should be properly diagnosis. As a mom I understand your frustration and concern for answers. I tend to push the system to get the answers we need for my son.

    My son began with vocal tics as early as three years of age and worsen when he was four. He was not properly diagnosed until he was twelve.

    Please keep us posted on your progress.


    • #3
      3 year old up every night for hours w/tics any input??

      Hi Worried Mom

      Welcome to the TSFC bulletin board. I too am very glad you found us.

      First I would like to let you know that it is okay to be worried and it is a perfectly normal response to what you are experiencing with your little treasure. The fact that you have no awareness of TS in your family history does not guarantee it wasn't there and if it truly wasn't then there are studies now that have found that the onset of TS can come about through the accumulation of the genetics contributed by both parents [ex. an ADHD dad and a high anxiety mom can produce a child who has TS]. Regardless of where it comes from the fact remains that you need to find a way to cope and understand what your dd (darling daughter) is going through because at the end of the day it's no ones fault and if it is TS there is no going back to fix it.

      It sounds like you are in an area where there is an understanding of TS and increased awareness because many doctors don't think of talking about TS when they first see such symptoms. Many members here will tell you they had to suggest TS to get the doctors to explore that possibility. The fact that these doctors have already done so many tests is great. TS can not be diagnosed from blood work, etc but having had all these tests allows the professionals the opportunity to eliminate all the other possible reasons for the onset of these symptoms. I would suggest you be referred to someone who has experience with TS or a special interest in TS.

      Many children start to present with tics at an early stage and to PJK's point it doesn't get diagnosed in most cases until later in their lives. I lived with TS till my oldest son was diagnosed and didn't know anything about TS till then. My oldest was 9 when diagnosed but I had a full list of things he did since a very early age that I had passed off as idiosyncrasies :roll: until I was asked about tics. Many doctors will not give a diagnosis of ADHD at such an early age because they fear a lot of the behaviors are due to maturation. Tics in kids can be common and in some if they are transient tics will go away. To have a diagnosis of TS you need to have both vocal and motor tics. The description you shared were all motor so has your dd displayed any vocal tics?

      As for the tic-like behaviors happening at down time, this is common too due to the fact that when your body starts to relax these involuntary movements can be released. At such a young age your dd may still feel the need to suppress without knowing that's what she is doing. This is seen in some kids as they hold things back till they are home or in their rooms and then let it go. When tics are suppressed they still need to happen and if held back the need to do it intensifies and then is worse when let go [ex. if you held back a sneeze as long as you could, it still has to come out eventually and then when you finally release it it is often much bigger and louder.. but it feels so good to let it go] The physiological need to express the tic has to be satisfied or the body will continue to look for ways to fill that need. Many adults learn to mask their tics and children will often do this too, they often do this automatically to hide what is happening [ex. a sniffing tic becomes the hand and tissue to the nose as if one has a cold] then no one asks because they make assumptions.

      Whether you are dealing with TS or not, it doesn't hurt to make contact with one of the TSA chapters in your area.

      Please feel free to post any question any time ( we are open 24/7 )and visit the various topic discussions that already exist. You may find things you can relate to or things that may help you with future doctor appointments to help clarify what is happening with your dd. Post a response in any thread that you want to reactivate if you feel it is something you would benefit from. Stay connected and I hope you continue to make this a place to visit.

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