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Hedgie

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  1. I know everyones course with TS is different.....but is anyone on this site that has had success......complete elimination with tics or such that no one would know. I have spent hours on the internet looking for answers......but everything is vague. I hear the fortunate few outgrow this condition although it says there is no cure. What does that mean . If things get milder as you get older...what exactly is mild when compared to someone who does not have TS. I'm so worried about my son and need to manage my expectations. Everything seems vague. Can TS actually be disguised as you get older so others don't know you have it? I read about an Arizona Beauty pagent gal that out grew TS by 15 ( Jennifer Smeasted)...is that possible or did she never have real TS. Just trying to get clarity on what TS looks like in the group that has relief as they are older. Is it possible to have it be so mild later in life that no one knows? I read some sites that say they were unaware their spouses had it when the met them...is that possible? So many conflicting stories......just trying to understand how the future looks
  2. I know this is more of a natural help site...but for those who started topomax for their child and had success, how long did it take to see an improvement. I tried the natural route ( magnesium, gluten free, still have appt set up with natural/ environmental dr/ saw dr T in hopes of it being Pandas) with no success and am desperate to give my son some relief. I have done a week on 25mg brand name Topomax and nothing has changed...should I stay on that dose longer...or up to 25mg twice a day as doctor suggested. Desperately looking for ways to stop the tics. Son is 9 and 60lbs......was really hoping this would help and worried what to do next
  3. Where do I begin modifying his diet?????? He is not allergic to wheat...so doubtful gluten free would be helpful, He is allergic to eggs so we aviod them. He is a level 3 on the prick test to corn...but corn is in everything...even toothpaste. I do my best to avoid , but not sure how to avoid corn. What type of dr. should I be seeing for his diet or to boost his immune system. He is really not a sickly child in any way. This whole motor tic thing is beyond my comprehension. I am very very scared.
  4. In the last 4 months my son has come down with numerous motor tics that keep changing. My son is very allergic to molds and pollens. He has been tested both rast and multi -72 ( the scratch test panel done on the back). Dr has recommended allergy shots which we have never done. This was all 2 years before he came down with his numerous tics in September( out of no where). My question.....could all the tics be somehow allergy related? If so, I am worried allergy shots ( injection therapy) will make tics worse. What about sublingual therapy...would that a safe alternative? Very concerned to put anyhing into his body that might increase tics. The worry about the tics is destroying me His allergy diagnosis is allergic rhinnitis, allergic sinusitus , dyspnea, pruitus Some mornings he will sneeze 20 times in a row and then be fine.....other times like in the last 3 months very little , to none. HIs only real noticable allergy symptom is his allergy shiners( dark rings under his eyes). he has had this since he was a baby. He has had both tonsils and adenoids out. The sneezing started with the adenoid removal. It was severe right after the surgery...sneezing 100 times a day..crazy.At the time we used pantanase and in 2 months of daily use the sneezing stopped cold turkey. We have not used the med since But really all i notice now his the dark shiners( everyone comments on it) and some mornings when he'll sneeze a lot in a row. Are allergy shots safe if you have a tic disorder ( no vocals yet...just numerous changing tics)? Are sublingual allergy drops safe if you have a tic disorder? Thanks for your help....feel like I'm grasping at straws.
  5. Does this really work for tics. Has anyone tried it. How successful is it at stoping tics. Desperately looking for answers to stop or at least reduce tics
  6. My son has numerous tics. New ones keep showing up. Never a period where he is tic free. It's been going on for 3 months. 2 doctors confirmed that it is highly unlikely to be transient due to number of tics no vocals What happens now. He just turned 9. How does manifest itself. What is considered mild tourettes? What is the worst time.... Will they get worse before getting better. Does anyone ever have multiple tics that dissappear completely. They say it can get better after adolescence .... Mild..... But in what context is mild. Will they tics still be noticed by others. Those of you who have touettes in adulthood or have spouses that have it....what mild symptoms do you have? So very very worried. I am having a very difficult time trying to read old posts. Can't seem to navigate website
  7. Trying to see the likely hood of my sons tics being TS as there seems to be NO history in our family. What is the likelihood? So much confusing info on internet.
  8. I am too thinking maybe Pandas....but I only know about if from the internet. Where do I start? How do they test? where do I go to get the ball rolling? I live in Southern Ca and seems like doctors here are not educated or believe in Pandas/Pans. I am able to travel anywhere to have him see a specialist . Who would you recommend if you could see anyone? Who will give course of antibiotics? I am so confused on how too start.. I believe he had strep a year ago...but never tested just had a horrible painful sore throat that woke him up along with a high fever. He was on 2 different antibiotics for it and after that kept complaining for 2 months about a taping feeling inside his head. Took him too nureologist at time who diagnosed nothing...seemed to resolve on it's own 3 months later. No ocd...but sometimes gets easily frustrated and suddenly afraid of dark. So worried. What should be my next steps? He is an otherwise happy intellegent boy. No history of TS in family. Is true TS always hereditary? Please tell me what my next steps should be. We r seeing someone at UCLA soon....but not sure this person believes in Pandas
  9. My son came down with eye blink tic in sept a week after he started new school. I noticed it immediately although it looked more like allergy ,and after 2 weeks became really rapid for about 3 days then slowed down to when it first started ( allergy like.... but more frequent then a normal blink)A month later he started a nose scrunch tic ( sometimes just nose sometimes lip involved to.... Like scrunching nose when your mouth is open). He has been doing both these tics although not always together for a month. Recently the eye blink has almost totally stopped and the nose now seems much less severe. I'm not sure if he now is doing eye roll. He looks off to side sometimes.... Not often and it looks more like a shy reaction and like someone who doesn't, look you in the eye( not rapid or darting). I am not sure if this is my imagination since I,m sick with worry.... No one notices it but me and in occurs very infrequently even for me. I have also noticed an infrequent shoulder shrug....hardly ever and does not seem tic like, but it does happen maybe once in the morning and a couple( 2 maybe 3) times at night while doing homework. It has been exactly 3 months since the start.. Eye is almost disappeared and nose not very severe.... Only when excited. Not sure if eye roll is imagined in my head as it does not look odd or if it is shyness and not sure about shoulder ...both are very infrequent. Certainly not like eye blink or nose scrunch manifested itself Is it possible this is still a transient tics Please answer truthfully no need for false hope ( i mean this very sincerely)Has someone ever had multiple tics like I describe and it was transient.... Not chronic or Ts? I know a years wait is necessary for dx. But I believe that is just a random cutoff number and one can actually tell earlier. Please let me know.... Internet has no real answer. Could it still be transient.... Has there ever been such a case? He is a very bright 8 year old. No problems at school both academically and socially. Grateful for any responses Thank you
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