Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

NurseMom21's Achievements

  1. Hello everyone, I am curious if anyone has experience with coprolalia? You can read our full story in my other posts, but last night my daughter's tics evolved to include swearing. Her tics started 3 months ago and so far she has been diagnosed with "transient tic disorder". Her tics are very severe and include complex motor and vocal tics and occur daily, every few seconds without any breaks. I have read that coprolalia is actually pretty rare with TS, and I am trying to find out if anyone WITHOUT TS has had symptoms of coprolalia? Or is this an indicator that she does in fact have TS? I know the diagnosis criteria for TS, symptoms >12 months, etc. But I'm having a hard time finding anything about coprolalia in people without TS. Thanks in advance! NurseMom21
  2. Hello Again Everyone! I'm sorry I have not been responsive to reply posts, but I have read them all, and I am so sorry for everyone else going through this. Someone asked I provide an update, so here it goes...(sorry this is going to be long, but please read and check out the video at the end of her tic storm from last night) Since my last post, my daughter's tics have been like a revolving door. The only consistent aspect has been that they have been present daily from the time she wakes up until she goes to sleep. They occur at a rate of several complex motor and vocal tics per minute. ALL. DAY. LONG! Up until February 14th, we had kind of settled into this new normal. Her tics were annoying to her, but the shock value had decreased a bit. On the 14th, everything changed. Her tics completely took over and caused bizarre behavior. She was going all through the house in a manic state, attempting to eat paper towels; she was trying to put non-food items into my microwave and turn it on, spitting on everything and everyone, climbing on tables, throwing food and objects. COMPLETELY out of control!! Her vocal tics also changed to full sentences, and she would even argue with herself in the tic; for example, she kept saying, "I have a bomb," "no you don't," "yes, I do." She also was vocalizing that she saw things, like a ghost or animals. This tic storm lasted a couple of hours. HOWEVER, she remained coherent during the whole time, and between tics, she could talk normally and respond to any questions. She said that she wasn't really seeing or hearing anything, but the tics were making her say those things as though she were. I took her back to the ER, and they admitted her, did blood work, a psych evaluation, and saw neurologists. They are still calling this a "transient tic disorder." They started her on risperidone 0.25 mg twice daily because we have already tried and failed guanfacine and Strattera. At first, it seemed the risperidone was calming her down some. But the day after we were discharged, her tics were just as frequent as they were before, minus the odd behavior. Last night, two days after discharge, she went into another severe tic attack. She was in her bedroom with her brothers playing, or so I thought until my son came out telling me she was stuck in a tic and was holding them hostage in the bedroom. I went into the bedroom to find her pinning her older brother up against a wall preventing him from leaving. It seemed like kids playing at first glance, but her responses were abnormal. I had to pry her hands off her brother and take her out of the room to sit down. She was running through many tics very rapidly and was incoherent. She could not respond to me or follow my verbal instructions. It was like the tics were holding her hostage. I took a short video of it and called her on-call neurologist. He asked if she responds to water being splashed on her, and I hadn't tried that, so I did, and it was like waking her up from a coma; she immediately broke out of it and became responsive again. The attack lasted at least 45 minutes. She was still rapidly tic'ing, but she could respond to me and was coherent. The doctor said he didn't think we needed to go to the ER and that she was just "stuck" in her tics... I don't know. Certainly, this isn't "expected" with tics. From my research, I have found many children have "tic attacks," but I have yet to find any that have an altered level of consciousness while having them. And I have yet to find anyone who has them as severe as she does on a daily basis. After months of waiting, we finally have an appointment with a PANDAS neuropsychiatrist next week. I am anxious to hear what they say. If anyone is interested, I have uploaded the video from last night to YouTube. Feel free to share it or comment, I am desperate for help and answers!!
  3. Anyone have two children present with sudden onset of vocal/motor tics around the same time? See my post in the Tourette's board: "Sudden Onset of Severe Complex Motor/Vocal Tics " I posted just this past weekend regarding my daughter. The night we came home from the hospital with my daughter, my 10 year old son came out of his room screaming that something was in his ear and biting him. I looked in his ear and could see wax and signs of an ear infection (he remained adamant that something was in his ear the full night); I took him to his Dr. the next morning, she agreed he had an ear infection and started him on antibiotics. That evening my son started jerking his head to the affected side of the infection, and making an "AH!" sound every few seconds. My daughter also has a similar tic, both motor and vocal and at times, they were both making the exact same movements/sounds at the exact same time. At first I thought maybe he is stressed with everything, my daughter and I were away in the hospital for 2 nights, he probably is worried and concerned for his sister and how she has drastically changed, or maybe he is mimicking her for some needed extra attention. But hat was 5 days ago now, and right now as I sit in my office typing this post, I hear my son in his room every few seconds saying "AH!" and I know he's jerking his head as he says it. He also has regressed in his speech, he is doing a lot of "baby talk" and when I asked him about it he says he can't help it. There is no way he is making himself do this, not to this extent. I'd give up on that within the first hour if it was something I could control. I feel like I am losing my mind! I cannot believe all of this, how sudden it is, and that whatever this is, it is effecting two of my three kids! Our house feels like a circus! My son had 3 or 4 strep throat infections this past spring, but aside from his current ear infection has been healthy. My daughter has had several colds leading up to her symptoms, but no strep as far as I can identify. Aside from my daughter having vocal and motor tics that suddenly appeared over the last few weeks, she hasn't had any personality changes or sudden onset of OCD or ADHD. She has a long history though of having sensitivity to fabrics, tags on clothes, the way certain pants feel; she has an attachment to a blanket she has had since infancy that she is almost codependent with and cannot be away from and also finger sucking that I cannot break her of (she's 12) and she is obsessive with collecting random objects (mostly containers, toilet paper rolls, and random pieces of cardboard) but these are not new issues for her. My son, aside from the speech regression currently, no signs of OCD or ADHD, though he has been a long time bed wetter. But again, that isn't new. I will say he has been missing more school than normal due to a lot of headaches, but I am not sure if that relates to anything or not. Both have struggled with school for a long time but are at grade level and no new regression has been noted. No personality changes in either one. I am just trying to make sense of all of this. Everything keeps pointing me back to PANDAS but I am not certain that completely fits either, especially now with both kids ticing...
  4. Hello, I am a new member in desperation for answers. My 12-year-old daughter started to stutter slightly, about 3-4 weeks ago. It wasn't bad, but I noticed it and asked her if she noticed it as well, which she did, but because it was somehow infrequent, I assumed maybe she had a lot on her mind. The stuttering literally went from just occasional words to 95% of all of her speech overnight. I took her to the ER, where they performed a head CT and blood work; everything was normal and suggested a pediatric neurologist. While waiting for the appointment with the neurologist, her stuttering continued at a high rate daily. Over Thanksgiving break with her dad, she started to notice a slight facial twitching. Her dad and I both assumed that twitching could be expected with the increased stress from the stuttering. She came home the Saturday following Thanksgiving, she still was stuttering, but I never saw the facial twitching. However, the following afternoon, she had uncontrollable jerking movements of her head/neck, shoulders, and arms. They were almost constant movements, with a max of 30-60 seconds between each movement. They were causing her pain as well. I again took her to an ER, this time to a pediatric ER of a well-known teaching hospital. They admitted her for two nights, performed an EEG, MRI, and many blood tests - everything came back negative. The neurologists' team told me because of the negative results, they think it is a "motor tic" that could go away on its own, or it could "wax and wean." Since discharge four days ago, her tics have evolved and now include shouting with her upper body and facial movements. She has slight tics in her legs when lying down, but they are far less severe. Though she now complains of frequent leg pain, despite there not being many tics in her legs. The tics are still just as constant as they were when we went to the ER; whenever she is awake, they occur about every 30-60 seconds and are exhausting. Interestingly, her stuttering has almost completely gone away since the increase of her tics. The only time I've heard a stutter is if she is trying to talk when a tic takes over. The hospital has referred her for CBIT therapy that will not start until the end of the month. They said it could help her manage her tics, which is hopeful - but in the meantime, I'm left feeling helpless as my daughter begs for me to make it stop. To combat my helplessness, I have taken on the task of researching everything I can find about tic disorders, Tourette's, etc., which is how I found this page. I have already purchased the book on triggers and am waiting for it to be delivered next week. I am very hopeful we will be able to identify her triggers. In the meantime, I just wanted to share our story and maybe hear from others who may have been or are in a similar situation. Does anyone else have a child with motor and vocal tics that came on as suddenly and severely as this? Also pain? I understand her having the pain in her upper body where her tics constantly throw her head/neck and arms around. But her legs, where she only occasionally twitches at rest? And her legs are where she has the most pain, often rating it an eight on a pain scale. I am sorry for such a long post; I am just so overwhelmed with all of this; I am still not 100% sure that this is a transient motor tic, but I don't know what else it could be. I am sure everyone else can relate to my frustration and worry; I am convinced there is no worse torture than to watch your child suffer like this. Any feedback, thoughts or ideas would be GREATLY appreciated! Thank you! -Ashley
  • Create New...