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  1. Can you please share the exercises the neurologist gave your son? I would be totally grateful. Sarah
  2. I am not an expert in this by any means, but I also have a 9 year old with tics. I have been a basket case, but through it all, my boy is fine. Here's what I do to calm myself. I ask myself 'is he being affected adversely by the tics? (bullying, self consciousness, distraction) ' So far the answer has been no. 'So what is my role in all this?' To provide for my kid and be strong if he needs me. So far he doesn't need me, so the bigger problem is in me and not him (which is good, because we are capable of changing ourselves if not others). In preparation for school, I wrote his new teacher a note explaining what is happening with the tics. I am happy to share it with you if you like. For me, I have a therapist that I am working with because rationally, I know the tics are a tiny part of who my son is but emotionally, I get very anxious. Again, that is on me and I have the power to put things in a better perspective. In terms of treatment for our son, we started with the pediatrician, who referred us to a pediatric neurologist. We saw two. One was awful ("well, then it's Tourette's"). The other was so much more reassuring ("Yup, your son has tics. He is in no danger. Try to get him involved in things that keep him focused and help him find ways to relax"). Hearing the two very different voices was disturbing, but at least both concurred that there is nothing more serious going on. Despite the emotional rollercoaster that the first neurologist created, I am grateful to have taken our son to a neurologist because I know that his general health is not in jeopardy. I still get very anxious and I still cry, but it helps knowing that I've taken appropriate actions for my son and for myself. Yours in empathy, Sarah
  3. So we took our nine-year-old to a pediatric neurologist today. She did a thorough neurological exam, asked us background questions, watched a video of our son ticc-ing. After she heard that he's been snorting (like clearing his nose/throat) for over a year and that he is blinking his eyes and moving his mouth, she announced that no further work-up is necessary, she thinks it is Tourettes. I am at a loss for words. I have so many questions right now: 1) Is this diagnosis even possible? I thought he had to have year of vocal and motor tics. (He has snorted for a year and does have allergies, but the motor tics emerged less than a month ago.) 2) Maybe, in her own way, this was meant to be a good thing? (I.e.--there is no other medical emergency, therefore these symptoms must mean Tourette's.) 3) . What do I DO with this? The advice is still the same. It's not bothering him or interrupting his life in any way. He has no OCD, ADHD, etc that we can see. So we just watch and wait (oh yeah, and know that this thing has a name--Tourette's. I'm not exactly sure why I am posting this. I guess because i need help processing what happened this morning and could use your support. Best, Sarah
  4. Thank you, Chemar for the kind words. It's so meaningful to know that there are others who get it and want to support each other. Much gratitude. Sarah
  5. Hi . This is my second post. I'm not sure if I should just add to my first thread or start a new one so if this is inappropriate, please let me know. I am having a hard time emotionally with my 9-year old son's tics (facial--a mix of eye widening and mouth circling for about three weeks now). I think in general, they have diminished, but when I see them, my insides are just wrenched and I have a hard time not showing my discomfort/worry. He has no other symptoms--eating, focusing, sleeping, socializing fine. Luckily, we will be seeing a pediatric neurologist next week. Here's what we have so far: The pedi did the following blood tests: CBC-- normal; Lyme-neg; Magnesium--low range of normal; ASO titer--normal. I have started him on Magzkids magnesium supplements (two in the morning/ two at night) and Renzo's Bright & Brainy B6 (one in the morning). I have reduced screen time to one hour max a day, reduced sugar and tried to cut out artificial colorants and preservatives. Of course, though, I have a whole raft of questions and it seems like this board is one of the better places for answers. 1) Given the blood results and my son's (lack of other) symptoms, how concerned do I have to be about inquiring into PANS/ PANDAS? 2) Could low Magnesium cause my son's facial tics? 3) What other modifications or suggestions do you have? What should I pursue with the neurologist? 4) How do you relieve your own stress? (I feel so selfish because I think this is affecting me more than him, but I can't seem to help it). I really really appreciate all your support. I know my son's symptoms are minimal compared to many, and yet this is so very hard. Best, Sarah
  6. Thanks for your support. Had the pedi visit today. They gave him a physical, looked at a video I took, took bloods to test for Lyme and referred us to a pediatric neurologist. That appt will be on August first. At least we know that he is in no immediate danger. The pedi encouraged us to continue with our summer plans, so Jake will be spending a week with the grandparents. It will be good for him to have some time just being loved and occupied instead of me stalking him all the time to check his tics!
  7. Thanks so much for your quick and thoughtful reply. We live just north of nyc. Jake has had basic allergy testing and is allergic to dust mites. We try to keep the house, especially his room, dusted, washed and vacuumed regularly. I just ordered a HEPA filter. Summer is such a difficult time to get diet under control. Jake is supposed to go visit his grandparents in two days and it is hard to limit the spoilage, especially since we won't be there. Something interesting is that we are a soda free family except on trips. Jake had a bunch of orange fanta at the beginning of our trip just when the tics began. I will definitely request that the grandparents keep his diet as healthy and unprocessed as possible. What do you think of the ten days of amoxicillin? Do you think that that is sufficient to rule out a bacterial infection? Is it something I should pursue further? I really appreciate your help. Sarah
  8. About two weeks ago my 9 year old son started exhibiting facial tics. He widens/scrunched his eyes and twists his mouth, generally doing the two actions together. These actions were happening really frequently in a series. We were on vacation in Vietnam with no internet or phone service at the time. By the time I was able to contact his pedi, the tics had deminished considerably. Pedi put him on amoxicillin 400mg x 3 daily. For the first 7 days, all was calmish. The last two days the tics are again exacerbated. We have also been dealing with interrupted routine, extreme heat and humidity, jetlag, diet change etc etc etc. I should also mention that my son snorts repeatedly and has for months. We thought it was allergies but now I'm leaning toward this also being a tic. Everything else is good. No attention problems, OCD, fatigue, eating changes. Tomorrow we see the pedi. 1. What questions should I ask? 2. What diagnostics should I request? 3. Yes, I am entirely freaked out watching my son tic. Any advice or consolation is greatly welcomed. I greatly appreciate your support. Sarah
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