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I just became aware of this from May 2022, so posting the link below for anyone who may be interested: Largest worldwide Tourette syndrome genetics and neuroimaging study also promises insight into related disorders
Stimulating research gives new treatment hope for Tourette Syndrome This interesting research reminded me of how my son's CBT therapist suggested an elastic band on the wrist and gently snapping it when tics (especially Tourettic OCD) became invasive. I recall my son finding it very calming, even though I found it strange at the time. The rationale in this research seems to offer an explanation for the effect. Anything that can relieve tics without medications is always worth investigating further!
Stop Tics Today
Chemar posted a topic in Tourette Syndrome and TicsJust an FYI reminder that, in addition to the main Latitudes/ACN website that is full of valuable info, Stop Tics Today is an excellent resource administered by Sheila Rogers, with a stellar advisory board.
Teen:incapacitating tics and issues
GloryMom posted a topic in PANS / PANDAS (Lyme included)Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it). Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much. She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen. The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath). As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall. This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better. Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.
PANDAS morphed into TS!!!
evolveme posted a topic in Tourette Syndrome and TicsAnybody else's kid start with a dx of PANDAS at a young age and now meets criteria for TS? My son was dx with PANDAS at 2-3, after a months-long strep infection that refused to die until we had done 3 different oral abx, abx shots, and a tonsillectomy. Classic sudden-onset tics, OCD, anorexia, crazy behavior. We thought he was growing out of it (less frequent episodes, with less extreme behavior.) But now he's 8, and his (mild) tics have been present on and off for about a year, and in hindsight I've realized that what is likely AD/HD started creeping in last fall (yet to get an official dx). So far, I have yet to find a peds neuro who 1. accepts PANDAS as a legitimate diagnosis; 2. knows anything about PANDAS; and 3. is interested in figuring out the underlying cause of my son's non-stop tics rather than throwing him onto the neuropsych medication carnival ride. I just set up an appt with his ENT to culture his sinuses, since he has had recurrent sinusitis for years and I want to rule out an occult strep infection. It infuriates me that the PANDAS people are working independently of the TS people, when there's clearly similarities in presentation (albeit the etiology might be slightly different), and a growing body of research that shows that comorbid conditions are typical and not atypical of this population (OCD, AD/HD, anxiety, etc.). I've been told that TS kids' tics "wax and wane" (yes, I know that! but WHY????), that PANDAS and TS is treated the same way (NO, THEY'RE NOT!), and that there is no "cure" for TS (maybe not, but MY SON HAS PANDAS!). Grrrr... my mommy instincts tell me these MDs are full of sh** and my son's PANDAS is at the root of all this. OK, rant over. Anybody have similar experience and/or can offer any guidance?
What should I have my allergist test me for?
Jrmiller posted a topic in Tourette Syndrome and TicsHi everyone. I've had TS + since I was 6 and I am now 43. I've tried every medication under the sun and now my tics are worse than ever. My OCD incorporates itself into my TS where I don't do the counting thing, but instead the 'how it feels/pain' thing. I am suffering from tremendous pain as well as so frustrated that I can't stop that I'm beside myself. I've just recently discovered that food as well as other things like chemicals, etc could be make tics worse. My allergist has tested me for trees, wasps and bee's. The only food testing that was done was on crab and lobster, though. So, because of what I have been reading I want to be able to tell my allergist what I would like to be tested for to further rule out things....Any suggestions would be greatly appreciate at this point as I am at a loss for what to do about my ticcing. (I have also tried the Magnesium Taurate, but it made me sick) Thank you a head of time for any responses and I'll apologize now for all the reading. <3 *J*
What is the normal pattern of tic changes?
KateH posted a topic in Tourette Syndrome and TicsI'm from the UK and am pretty certain my 9 year old daughter has TS but has not been diagnosed officially. More than 6 months ago now she had what I can only describe as a complete meltdown. She had huge anxiety, couldn't be separated from us, didn't go to school for 3 weeks, had rages, complete moments of irrationality and at the worst point was so exhausted she would fall asleep in the day. We had her at the doctors more than once, thought she was hypoglyceamic etc etc. at the same time she developed a blinking tic and I realised she had a throat clearing and sort of gulping tic for a while. We managed to get her back to school and things calmed down a little and I started to research..... I discovered my husband who also has mild tics ( I didn't notice for 20 years!) also probably has TS and had more obvious symptoms when he was a child. My daughters tics have started to get worse and she has developed a very obvious, prolonged nose scrunch, flicking of her wrists and still blinks, gulps etc. I am currently giving her natural calm magnesium ( 2 teaspoons per day), omega 3 1000mg, and 10 mg B6. I have cut out preservatives, additives, colourings as much as possible and she is currently dairy free and low salicyclates. I thought I was seeing an improvement as the frequency of her nose scrunching has reduced significantly but I i noticed in the last 2 days she has developed a flicking back of her head. It's not that often but I'm now worried this is just the start and it is going to get really frequent and the reason the nose tic is decreasing is because this new one is starting. I'm finding this whole thing really tough and tonight just feel like crying. Do people have experience of how tics wax, wane and change? Is this a normal pattern? Do you think what I've done has made any difference? Has any one got other suggestions? Sorry for all the questions, I am so terrified everything is going to get worse..... Kate
WriterGenevieve posted a topic in Tourette Syndrome and TicsHi Everyone. So glad I found this forum. My son's first tic started when he was around 5 - he is 9 now. There are many contributing factors that could have triggered the onset. We suffered from longterm exposure to carbon monoxide and after 7 mos. of the exposure - right before we found out we were being poisoned - his tic started. He also had swine flu and tamiflu months before...so who knows..it was all too much on him. We've both suffered lifelong damages from the exposure - but it's too much to explain here. His tics used to happen every 6 mos. in the beginning after the first one - last a couple weeks and be gone for about 6 mos. I had no idea what they were - involved blinking eyes and making a face with the eyes involved, then breathing, inhaling noises, coughing, throat clearing, squeezing his hands and flinging his head back (the worst one he's had) - or a combination of that and some other upper body movements were his worst. He has also had Strep and I often wonder about PANDAS. I have tried a lot of different things. I've been writing down everything as things change with him - to keep an eye on what's working or not - and what's triggering if possible. A few months ago my friend told me about Elderberry syrup. I bought some - take a teaspoon with a couple tablespoons of grape juice (tastes great if you make it yourself) supposed to be extremely strong immune system booster - used in other countries as a replacement for antibiotics and to treat illness, chronic fatigue, fibromayalgia, etc. I could go on and on. There have been studies on it also - you can look it up. We have been taking a teaspoon or two (or three if getting sick) every day for the last couple of months. I noticed his tics waned down to almost nothing - just a little hand tic when reading or stressed out, etc. Then I had us stop taking the elderberry syrup for a week as we had stomach problems and for some reason I thought it might be linked to it (I had just made my first batch of elderberry syrup from dried elderberries and it was around the same time we got stomach problems which developed). During that week with no elderberry, a new tic developed with him making a strange face and sometimes licking his lips and doing something with his nose. After that week I started giving him (and myself) the elderberry syrup again as usual as we started having some other issues with a cold developing. I realized the elderberry syrup did not cause us any stomach problems. Since I started him up again the tic is completely gone and has stayed gone - he has had no tics that I've seen for the past few weeks or a month maybe. This is a huge huge deal as I have tried all the vitamins, magnesium, supplements, etc. and they haven't done anything noticeable. I will update if anything changes...OH by the way - the tics that he has had over the past 8 months or so have been consistent and nonstop everyday - something happening with them. It has been the LONGEST stretch of nonstop tics as when he first started having tics they would only last a couple weeks and go away for about 6 months. If anyone else tries this - please let us know the results..I would love to know if it helps others!!!!! If you want a recipe to make it yourself, I can give you a link to the recipe. Or else you can buy it from a natural health store, organic store, but some brands have a lot of alcohol in them to preserve them and the taste isn't the best. Depends on the brand anyway. ...So far - the past month to two months - nearly no tics - lately I just give him 1 teaspoon a day. All the normal triggers for him are not triggering them as of now. I am really happy for that. Take care everyone! (Also - since doing this with the elderberry syrup - I haven't been giving him anything more than a regular vitamin and sometimes forget also)