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Mother seeking input from other parents for her 12-year-old son

I have three boys.  My youngest, K,  was diagnosed with TS in 2nd grade, and I’m not always sure which is worse — the TS or the OCD.  They also believe K has bi-polar disorder but since he is so young they are, for now, calling it a “mood disorder.”

K went from this happy child to a sad 12-year-old middle school student.  We see a doctor in New York City monthly and a therapist here weekly. He is on Clonidine and Zoloft. I just took him of Risperidone because I didn’t feel it was doing much for him.

His tics are a lot of head and arm jerking.  He also repeats things over and over, along with high-pitch speech once in awhile.  AND, he whistles the same tune ALL the time. (Can you tell that is my favorite one??)  He is starting to isolate himself and wants to spend more and more time alone, and he’s gaving a lot of difficulties in school, too.

I would love to hear other mom’s or dad’s inputs — to talk to someone else who is going through this would be like therapy for me.  Other people can say they understand, but they cannot unless their child has TS and the other things that go with it.  There are times when I’m not sure I can make it through this, as I’m sure all moms in this situation have felt.  I would love to “vent” and also learn what possibly worked and did not work for them.

16 Comments

  1. Hi Lynn,
    Glad you could relate to my story, like i could to yours! I don’t have any other children, and I know the whole dynamic of our home would change if i did-I just can’t imagine!

    Yes, school issues seem to be on-going. The 2 hours a day (just increased to 2.5 hours), has been working so far, but we still have days when he can’t do it, like today, i had to pick him up early. Even the two hours were too much. We are in South Jersey, and frankly, I haven’t seen many options for private Therapeutic schools. I know there are a couple in the Princeton area that have good reputations.
    Glad that you’re going with an advocate! It will make things much easier for you! The hardest for me in dealing with the schools was how to stay emotionally detached and just present the facts. It makes me SO mad that they can’t see what a sweetheart my son is, and behave accordingly! 🙂

    As far as feeling sorry, oh that’s a tough one. There are days when i feel like things will be ok–and I always tell him that every person has a gift, and every person has some troubles. The key is to work on your gift, and find a way around your troubles. But there are days…like last week when the kids he was playing with were kind of teasing each other, and he didn’t understand and he just flipped out on them–those days i DO feel sorry for him. When he’s crying that he wishes he were like all the other kids who could make it through school all day…yes, i feel bad for him. But i try to help him focus on the things he does well-he is a great mechanic, and an good drummer and he’s very handsome!

    They have mentioned bi-polar, but he has no sleep issues. He’s a great sleeper (I’m so lucky!), so he doesn’t have the manic phase of being awake till all hours. And he wakes up right away in the morning. His moods fluctuate during the day–he will go from silly-acting like he’s drunk, and flip to “the dark side” where he is aggressive, cursing. Then back to “normal”. When he gets back to normal, he whispers things under his breath to himself-that’s how I know he’s “back”. So for now, they just say “mood-disorder”. The Abilify has helped a lot with those moods-didn’t eliminate since I have him on such a low does, but it helps. Zoloft did nothing for him.

    I hadn’t heard about the conference in Arlington, I am going to look into that-I’d like to go! We do go to DC every so often as well. The last time, we were in the Museum of Nat History exactly 2 minutes before he cursed at someone and said we had to leave NOW! Too much for him, So, we just walked up and down the mall, looking at the buildings and people. Sometimes, that is enough!

  2. Great sharing going on! I noticed the reference to gluten-free on here. Would someone perhaps be willing to write a blog entry on gluten-free and how it can help with TS, if it can? I think a lot of people would love to see that. For those of you already signed up, you can post on that at any time. For those of you that aren’t, write me at parents@njcts.org on how to do so. Thanks!

    Jeff

    • I keep saying I want to try the GFCF diet, but don’t know where to start. Plus I have it in my mind that it is expensive. I would be very interested in reading some blogs about the diet. It’s worth a shot to try!

  3. I am sorry, I don’t have any words of wisdom to help. All I can offer is a friend to listen who understands your frustration. My daughter Emily is 6 and was diagnosed 3 weeks ago. I feel like I am on a blow up raft in the middle of the ocean. I don’t know how to handle her, how to help the school with her. All I want to do is cry. She actually asked me why her head keeps shaking. I am sorry that he is having trouble. I have found that the hardest part for me so far, is being helpless. I cant control this stuff and I hate it. I would love someone to talk to also. Has he done the relaxati

      • Oh Michele,

        Your story soooo touched my heart because I so know how you feel. All of us have been where you are right this very moment. When our child is first diagnosed and they ask the big question of “WHY ME”? My heart hurts for you both and yes, being able to talk to each other is the best therapy in the world.
        My advice for you with the school, if you h aven’t done so yet is to get her an IEP. She is in first grade? Kids that young are pretty accepting. It’s a bit harder as they get older. Ask to have her evaluated. Have you done any of this yet?

        How is she with friends? And any meds yet? Do you have other children?

        I know how hard this is but try to hang in there and write when you need me. I will try and check everyday and if I can be of any help to you at all, please, just ask!

        God Bless you both and take care!!

  4. my son was very oppositional for a long time, and he still is at times. one day he told me that it is very irritating to have constant tics and it puts him in a bad mood all the time. i didn’t know that. plus his adhd left him short tempered and cranky a lot, especially when he had to do homework after sitting in school all day. my suggestion is try not to worry about the labels. focus on what your son needs in school to make his day more comfortable. stick with it – don’t give up even on the worst of days, because there will be good days ahead.

    • great advice Lew and thank you. I’m trying. My son too is very oppositional and grabs my arm, firmly but not to hurt. His therapist is working on him with that so we are trying.

      Appreciate the pep talk and you hang in there too!!

  5. I just wanted to let you know that I can totally relate to your story. I also have a 12 year old son, that has suffered from many of the same things as your son. The latest thing that we have done is take out gluten, dairy and peanuts from his diet. We have seen amazing results. He has been on an elimination diet for the past 3 months. It was not very easy at first for either of us, but I have learned SO much about gluten free foods and I have seen results!!! Hang in there!

    • Julie,

      REALLY??? Your the 2nd person who mentioned gluten-free to me. What has it changed? I’m really curious about this. I can’t imagine how hard it must have been to do? Does he like the food you prepare?? And where do you get the receipes from?

      Let me know and t hanks!

  6. Your comment about he whistles the same tune All the time, made me think of my son. He is almost 10 and LOVES SpongeBob. I comment to people “as if SpongeBob isn’t annoying by himself, my son has to repeat him over and over until he hits the pitch right on.” It drives me nuts. And you’re right, no one really understands unless they live it. I must admit, sometimes I have to laugh at some of the tics. For example, when he was in Pre-K one of his tics was to touch everything under his chin, with each hand. He would come home with marker, pencil, etc. under his chin. I would get a chuckle out of that tic.
    My son, 4th grade, is very good with math, but reading comprehension is his worst subject. He puts himself down because of it. But, we keep on truckin’. It’s a learning experience for all.
    Keep venting. (and smile)

    • Laura,

      oh yes, the whistling and repeating!!! Gotta love that! Kyle also will repeat things from tv that he hears. For a day or two, not so bad, then, God forgive me!! It’s so hard to say that because I sound like an abusive Mom but it truly can get to you after a while. Kyle talks to his dog (lab named Tyson) ONLY in a very high pitched voice. Usually as soon as he gets home from school. Sometimes, my stomach starts to flip flopping right before I know he is coming home cause I know, I just KNOW it is coming and there are some days I simply can’t take it, ya know?

      For the most part, Kyle is a wonderful 12 yr old boy who is sweet, loving and extremely empathetic towards others. He is very sad, too much actually, that he has “no friends”. He does have some but usually younger than him because boys of almost 13 are, well, boys of almost 13 and they are doing things like going to the mall and Kyle wouldn’t do it. He is too self-cons. and nervous. I always tell him that we don’t care what other people think and I truly don’t. Guess it’s not as easy for a 12 yr old.

      Hang in there and again, stay in touch!!

      • Yes, I sometimes have that feeling before picking my 2 kids up from school. They bicker all the time, I suppose because they love each other. We are not wrong in feeling that way…we still pick them up, right? 🙂 My (almost 10) son tells me he doesn’t make “the noises” (loud, explosive vocal tics) in school like he does at home…he doesn’t want to scare anyone. My feeling is….oh yay, he saves it all for me after school and all until bedtime. Which sometimes takes 2 hours in his bed until he falls asleep. But it’s usually around 45 mins. to 1 hour. Be well all.

  7. Hi! Your story sounds so familiar! I am a mother of an 11 year old boy with a lot of the same issues. My son was dx at 5 with tic disorder, then Tourette’s . He also has mood disorder and OCD, and anxiety disorder. Along with some other alphabet soup dxs…

    I have a hard time distinguishing from the OCD and the Tourette’s. He licks his fingertips all the time. He says he just has to do it. Some times more than others, he says his hands are “lickey” (usually after washing them) and he can’t stop himself. He has been on a number of medications, but the only one that has helped him so far has been Abilify-for the moods. None of the anti-anxiety meds have worked for him. We see a therapist–although are on break with her now, so he can pursue drumming lessons (I can’t afford to do both). His tics are the hand licking, a finger/arm thing that is worse on the Abilify-but not bad really. Other tics come and go such as neck jerking. He almost always has a facial tic of some sort-usually blinking. He has a very high pitched squeal that he does when happy, and a couple of made up words that he repeats along with that. If your ear is near his mouth when that happens…yikes! I laugh along with the silly sounds, they’ve just become who he is – it’s hard to think of him without them! He’s a sweet boy under all the issues-it has just become a balancing act of how to manage the “behaviors”, acknowledge that he can’t help it, and keep my sanity as a single mom!

    We have had a lot of school issues, he gets overwhelmed very easily, so only attends school for 2 hours a day currently, and he has a teacher come for 2 hours a day for academics. We’re trying to build from there.

    I understand what you say about needing to be around other parents who “get it”. That is SO important. Because unless you are living it every day, have felt the disapproving stares from customers in line at stores when your child just blurted out something inappropriate, or tried to sooth your crying child when they “just want to be like everyone else”, and worried endlessly about their future, you won’t understand.

    • Elizabeth,

      OMG!! Reading your story was like reading my own!! Thank you so very much for writing!! Do you have other children? I found it interesting that your son only attends school two hrs. a day with 2 hrs at home. My school district is giving me a hard time and I just got a child advocate. I’m actually tired of fighting with them and have asked him to be transferred to a theraputic school with, of course, them to pay the tuition. If need be, I will hire a lawyer. Hope they don’t take it that far but I am confident I will win. It’s so hard when your child doesn’t look “disabled”, for the lace of a better word.

      I agree with the TS and OCD as I too am not always sure which is which. Funny, he will usually clear that up for me. It is so sad sometimes, right? My Mom always tells me not to ever feel sorry for him because he will pick up on that. Easier said than done, yes?

      Anti-dep., Zoloft to be specific really worked for Kyle and his “mood disorder”. Did they mention bi-polar to you??

      Drumming is a GREAT thing for kids with TS. Keeps their hands busy (he can’t lick!) and I know an adult with TS who taught himself and now plays in a band.

      I was thinking of attending the conference in Arlington VA. We are in NJ so it wouldn’t be that far from us. You? Just took Kyle to DC over the weekend and we really enjoyed the museums. Some of his tics really echoed nicely in there!! lol

      write when you can and thank you SO much for responding.

      God Bless

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