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mert

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  1. Here comes an other update. I started following tics on an excellent sheet that helps me figure out progress of tics and when they emerge and when they get out of the picture. At the very first 2 months after 'new' noticeable tics kicked in we had some ups and downs however they never got very bad or to a point that would effect her social life. At the 8th week a steady decline started and leg/arm jerking slowly decreased in intensity and frequency and now gone. However during the course a few more tics came and go. We had some head nodding that was very infrequent for 5 weeks , we
  2. Please note some of the EMTICS based research WP's are released with a lot of new information on tics. This page gives an excellent summary of all EMTICS based WP's at the moment. (more to be released everyday , probably slowed down by the Covid situation in Europe) https://cordis.europa.eu/project/id/278367/reporting?rcn=59137
  3. That, I think was a theory and as of today , to my knowledge, root cause still is not identified. I am very glad that your son has recovered. it'd help us a lot if you can share more information about when tics started and how severe where they (according to YGSSt score) and at what speed tics went down to a manageable level.
  4. Maybe I should clarify , I did not say that food/allergy/environmental factors etc are not related to tics. As a side note, on a few scientific researches allergy frequency seems to be higher among children with tics vs general population. However there seems to be no scientific, properly managed research on effect of diet on tic severity. that does NOT mean that diet has not effect on tics. It's not easy to plan a research that will correlate diet vs tic severity due to several factors. Individual experiences should not be presented as 'cases' , one of the reasons is, as stated on the r
  5. Tics wax and wane , I am recording an excel sheet that saves all sub-parameters of YGTSS (which I find pretty coarse) for each and every day for my DD. Unfortunately I am unable to correlate tics to food/allergy/complements at the moment (also there is no scientific evidence on this too) but still watching closely. At most of the tic disorder cases , tics elevate in frequency and intensity during TV/ipad/phone watching (there are 1-2 theories on this) and I've read on several episodes that eating also has a similar effect. Both of those hold true also for my daughter. First of all
  6. Hi Mlee, Excellent question. Earlier studies about this topic had strong discrepancy between each other. (there is also an other study about what could be the reason about this discrepancy) Good news is there are a few newer studies about exactly this topic , that were managed a bit more carefully to achieve more consistent results. One of the largest studies is called EMTICS , unfortunately despite all my efforts I am unable to reach the results. However this one is very very good : https://www.ncbi.nlm.nih.gov/pubmed/30850688/ You'd better read it yourself , but a brie
  7. It's been a while. But just in case there might be someone interested in the progress, here is an update after more then a year. Number of active tics, frequency, intensity everything followed a down trend until previous week to a point where tics were not easy to notice externally. Only visible one was nose twitching (or what ever it's called) , and I've seen exact same mimic on some other kids and it might have been more related to her allergic rhinitis rather then tics. However a month ago I started to sense a bit shaking on her arms , tiny, hard to sense unless you are holding
  8. Hi, Sorry for long answer My advice is first sticking with science, which unfortunetly does leave a lot to be answered on this topic at the moment. I fully understand and have seen the same exact behavior of accusing vaccines/antibiotics or other stuff. That is very unlikely to take you anywhere. There is no proof that links vaccines and antibiotics to TS/TICS. TS/Tics are quite different then most other illnesses and assessing them are quite difficult, which leads most scientific papers having contradicting and confusing information. Here is a very brief and quick summary of
  9. Back with more update. Even on a declining thread, my ds tics kept on morphing , however they got increasingly harder to notice. I think that I still see some tics on her face, I am no longer certain. If I were not well informed on the topic, I'd not notice anything. However I got a feeling that school may increase her stress little bit and may trigger old tics. Not sure though. This is how it's going on at the moment.
  10. Just back from vacation and wanted to share the status. I think we did a nice job of controlling the stress of travelling back to home country (and travelling inside the country) and coming back to Dubai. We did not experience elevation of tics at any point during the last month. Tics are mostly very mild and was not easy to detect for others while I was still able to notice them. Most of the body tics seems to be gone and replaced by mild tics around face. (I am suspicious of a new hand tic but don't have enough evidence) Vocal tics seems to also have gone but still she makes nois
  11. Thanks Mlee, this situation is pretty new to us so I know we will have ups and downs. I am aware that people are very focused on diet and other stuff, we also do, but #1 trigger of tics in our issue is anxiety and how the kid handles positive/negative stress. I am now training my self on the black art of carefully selecting words, attitude and behaviour to make sure that anxiety is minimised. It's really not easy as some times a surfaced crying jag is a lot better then hidden worry at the back of her head.
  12. Here is an other update on our status. We went to the allergy specialist, however we were not able to complete the blood tests as two different parties were not able to get the blood. My sig other postponed it... We will probably give it an other try in September. Since the last post tics went down a little first, then went up a little for a brief period , and now for the last 1 week there are significantly down. I still see/recognise them but it's others don't see. I think that not going to school has a positive effect. Lowering the anxiety level was my key focus and careful
  13. Hi Sarotchka ; Been there, so I understand how frustrated you are. Just beware that he is at an age where he would be more self conscious and your behaviour can directly elevate the levels of anxiety. From reading million lines of inconsistent research papers and forums what I've learnt is : 1- Rule out the PANDAS option. Looks like your pedi is aware of it so he gave antibiotics right away, it would be good to take a look at anti titers. On most cases one round of amexilin should have a positive result though not permanent but there are several number of cases where a signifi
  14. A short update, while I am on the site. Tics are slightly getting better but still not as good as it was a week ago. Her allergy level seems to be improving, inline with tics condition. As of yesterday I've removed the very last rug (was at bathroom) and added pillow protectors (anti allergic - dust mite proof) and changed a few of the pillows with new anti allergic ones. I did feel an improvement as my nose were far more open in the morning then they used to be. Will add mattress protectors but it's slightly hard here to find zipped ones. I am aware that I can only control what is in the hous
  15. Hi Shelly76, I really wish I had an answer for you, and I am also pretty new to all those. My DD usually tics more when eating (not %100 consistent though) I am not a big fun of medication, but in your case while the effects of puberty is reversed you may try some alternatives. Unfortunately it looks like this is also hit and miss with some possible side effects. We all understand that it's hard on you and try to gather around all the support you can.
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