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mert

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Posts posted by mert

  1. Hi, 

    We are doing ok, we still have 3-4 tics with wax and wane. In the long run we think we are in a descending trend. 

    Please do not consider me an authority. I am just an other worried parent. 

    Unfortunately there are way too many unknowns about tic (and related) disorders. There are very few researches that focus on underlaying reason for tics and why some get better and others don't. Luckily there are now, some researches on the topic like EMTICS and some other I pointed out in other posts.  

    I try to stick with evidence based treatment strategies but this does not mean that others methods can not work. Tics wax and wayne and expected trend from onset is downwards. This makes 'isolating' the effects of supplemental vitamins/diatery changes and other things very hard. 

    We try to follow a healthy diet with no MC Donals or smilar stuff. We tried 'gluten free' diet for a while and also a 'milk' free one. It was quite hard for us. At the end we gave up but still limit 'milk' as our doctor told us that he does not think these have any relations with tics but reducing milk is considered healthy anyway and won't make harm. 

    I am not knowledgable on mercury poisoning enough to comment on it. Mold is unhealthy and so there is no harm getting rid of it. I use dehumidifiers time to time to prevent mold as I am practically living on an island. 

    For the naturopathic DR, I only believe in evidence based medicine/treatment , if the DR can point to some research results about why he is making the tests etc, I'd check , otherwise skip. But that's me. 

    I know how 2 months feels like multiple years under stress, been there. I remember that I lost 20 lbs in the first 3 months very rapidly. However when it comes to tics, it's a very short period. 

    Can some movements be other things then tics? Yes, they can be. Some hyperkinetic movements can easily be misdiagnosed as tics. (or there is a type of seizure which often looks like a tic.) Here is a paper on the topic you may find interesting. 

    https://pubmed.ncbi.nlm.nih.gov/9613740/

    Also compulsions, impulse behaviors etc can be misdiagnosed as tics too (does not like your case though) , you can read an old paper on the topic here, a google search may find newer ones. 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656307/

    I believe in the thesis that Tics, OCD, Hyperactivity etc.. are different manifestations of the same underlaying condition. 

    I also read that tics being elastic is considered a good thing, on the other hand I think it's actually the norm. Tics keep changing, usually in 6-12 week periods. But some stick longer, some stick shorter some come and go changing a bit every time. 

    While not useful much, I also observed that sensory physical stimulation does trigger tics. As an example, using googles at the pool, after some period of time would start triggering 'eye' related tics. Teeth development (new teeth coming etc..) can trigger tics around jaw. 

    I believe relieving anxiety and supporting self esteem should be the focus. I support her to gain new skills as much as possible to up her self esteem. We had the same issue with gymnastics and continued online. Not 100% effective but 80% was ok. She got quite strong so she does not feel under stress when physically challenged. 

    Btw you are as important as your kid and you also need to find ways to keep your anxiety levels low and manageable. It will build up and it can result in behavior that will result in increased anxiety in the child. (been there , done that) 

    Keep on updating us 

    PS: Intensity of the movement (speed, extension, strength behind) etc is also a good measure like frequency and can give you insight on the trend. I think we've seen noticeable decline after 4-5 months or a bit more. 

    best regards

    Mertol 

     

  2. I personally think that hyper activity is an other form of a ‘tic’ , an urge to do something, so might be considered part of the spectrum. That’s my personal opinion yet prof I chatted on the topic agreed the view. 
     

    We had the same issue of tics before sleeping for a long while, almost a year. 
     

    Make sure you got all the help you can to cope with the situation. 
     

    i am positive that you will be in a lot better situation in short time. 

  3. It’s quite common that tics will rise when she is tired. It used to be 10x common for my daughter at the beginning.Also we realized that she would have a lot less tics if she slept more the usual. That’s what we did, 

    1) Limited the TV and ipad time to almost 0... Basically we played games instead. Bonus is she now prefers playing with vs any screen time. (We are not that strict on screen time as we did those days) 

    2) We did not push her out of the bed for school, asked school to tolerate this which they did (but it was fs1/2 anyway) 

    I personally do not think anythink we did changed the course of tics much in the long run. But removing anxiety, spending more family time helped with ironing out the peaks.

    Statistically it’s very likely that she will get better. However recent studies show that it’s likely to be with you for a few more years. 
     

     

  4. If she is aware of the tics, relieve the stress by explaining this is ok and sometimes normal and it’s likely to go away. Don’t try to make her stop, this creates anxiety and makes things 3x worse.
     

    First month was by far the worst one. 

    PS : it’s important to asses if there are comorbid behavioral disorders like adhd , ocd etc. as they should be treated. If they are not present I would not worry much. 

  5. Allergy tests came back negative and I could not corralate tics flare ups with allergy in the long run, although I am still having an eye on it. 
     

    since your doughter is older and if she is aware if the tics, unless tics decrease (which is likely to happen) quickly you can start BCIT (or bict , cant remember ) 

    For positive stress , I try to create competitive games and spare time for them. For example we play hours of woleyball with a balloon where a coach devides the fileds or play miniature football competitively. It’s basically involving just a bit if competitiveness (making sure she has more then a fair chance of winning) to some tasks (not everything) 

    i.e. When making dresses to her ponies , I challange as can we make the best ever dress etc... 
     

    best regards

    mertol

  6. Hi,

    I feel you.
     

    First of all every one has a different progress. It’s more probable that situation will improve in 12 months and will continue to improve.

    There is too much emphasis on ‘vocal’ tics. My view is some vocal tics are not actually vocal tics (any tic that involves muscles to make noises are not ) and Even if your kid has ‘real’ (whatever that means) vocal tics , this should not create extra worry at the moment. The diagnostics criteria for TS is quite out dates and pretty much meaningless and most doctors agreed

    I concentrate in a few things 

    1) Remove negative anxiety from her (positive stress is good , should he regulated though) as much as possible. 
     

    2) Improve self esteem , make sure she gains skills / strengths that makes her comfortable  

    These seem to help a lot. 
     

    And with time our situation improved, although it’s not fully linear. We had several periods where it went tue other way, for a few weeks/months. 

    I keep an excel sheet to quantify the status and trends. It also relaxes me. 

    let me know how it goes for you

    PS: There are a few quite interesting studies going on about the subject. 

    best regards 

  7. 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 had a jaw opening tics that was also very infrequent for 8 weeks , a hip related tic that was frequent when walking but went away in a few weeks. 

    Interestingly some long standing tics are gone now too , like broadening nostrils and nose twitching (not sure this was tics or related to allergic rhinitis) are either gone or very very infrequent that I do not notice. 

    On the other hand an abdomen tic (that is pretty easy to mistaken for a breathing tic ) is back. It's not frequent and very hard to recognize externally so that does not worry me as much. 

    EMTICS have published several papers , so if you've not read them those can be good resources. 

    We are not using any supplements other then the very usual stuff. We are still focused on 'positive stress' , less TV/Phone'Tablet time , more physical activity. I think that being confident really helps her a lot and at her age part of the confidence comes from her physical capabilities, so I feel like gymnastics really help her a lot. 

     

  8. 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

     

  9. 1 hour ago, evemac said:

    My answer is based on research that may be outdated, but I read that it may be synaptic pruning due to outdated/no longer needed synaptic connections as the brain matures during and post adolescence. 

    My son just turned 16, and his tics are now so few and far between after merciless tics through his early childhood. He has quite a few yesterday, and I realized that the only time I see them now are when he is sick (which is what it is) or very tired. 

    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. 

     

  10. 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 research I linked on my first post, tic severity has tendency to decrease upon onset date within 12 months, significantly already. So it would be very difficult to asses the effects of diet change ( or complementary vitamins etc... ) alone unless you have significant amount of people monitored a long with a control group. 

    That still does not say say diet has no effect, it only says there is no scientific research backing up this claim. 

    There are lot's of unknowns about this spectrum, however it looks like at last it's now been recognized that while not fatal , it's effects on quality of life of the individuals and family can be severe. So we will be seeing lots of new research on the topic in this year. 

  11. 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 I think that TS should be removed as diagnosis completely. Tics are likely a spectrum, and here is a nice study supporting this : https://www.ncbi.nlm.nih.gov/pubmed/30661132

    I also disagree that every  tic resulting a 'sound' is actually a vocal tic. Abdominal tics can result in sound outputs involuntarily. (which we also had) 

    Unfortunately it looks like either there is no such thing as transient tic disorders or it's rare. Here is a nice study that shows that tics were detectable after 12 months in 100% of the cases, however severity decreases significantly. https://www.ncbi.nlm.nih.gov/pubmed/30850688/

    In your case absence of anxiety disorder clearly gives an advantage for marked improvement in 12 months. 

    Our case looks very familiar to your case. I have thread where I regularly update our status. In summary we started with very severe tics on large muscle groups and now in 18 months (with a lot of waxing and waning) tics are still with us, however significantly milder and the difference between our best/worst periods are decreasing. 

    In our case I found the following mostly helpful

    1) Keep her occupied. We sometimes watch TV, but I try to make it as interactive as possible and don't leave her a lone with TV. Still her tics elevate during TV sessions usually. Ipad is only used for accessing information. 

    2) Even without visible anxiety disorder, we do our best to either remove unnecessary anxiety from the environment or give her necessary skills to manage difficult situations without being anxious. 

    I am almost sure that you will be better and better with time. 

  12. 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 brief summary is : Tics improve as a group in 12 months. Absence of anxiety disorder looks like one of the biggest factors. 

    I'd also recommend this study https://www.ncbi.nlm.nih.gov/pubmed/31241402/

    This study correlates improvement with the ability to suppress tics. 

    I am expecting to see a few more related studies being released in this year that would help parent/doctors plan treatment based on outlook rather then wait and see approach. 

    As a side note, I've never believed in transient tic disorder and TS diagnoses. What we are experiencing is more like a Spectrum Disorder and here is a nice study supporting this approach, https://www.ncbi.nlm.nih.gov/pubmed/30661132

    I also believe current assessment methods are very coarse (YGTSS) and preventing from correlating symptoms/improvements etc with other factors. We will get significantly better information once researchers move away from YGTSS and smiler coarse classifications. 

    Back to your question EMTICS should at the end of the day provide a better answer to your question in the long run. 

    Best regards

    Mertol  

  13. 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 her hand. Their frequency and intensity kept rising , interestingly nose twitching also lost it's frequency and intensity in parallel (but her allergy got under control too ) . 2-3 days ago shaking on arms and legs became externally visible to trained eye. 

    Quite naturally this started worrying me and wife. We are taking our usual precautions that seems to usually work (or maybe just coincidence) 

    1- Decrease negative stress to a minimum. We are already quite careful but not focus a bit more and micromanage... She does not have any anxiety disorder. 

    2- Increase positive stress, like competitions , family puzzle solving sessions etc... 

    3- Increase family and friend time , increase play time (shift balance from other places like homework unfortunately ... ) 

    4- Less TV , less diphone (we are already in great shape so not much of a problem) 

    Maybe we restart magnesium tablets , hard to know if they work or not... 

    And finally a research paper answered some of my questions. If you've not seen it , please read. 

    https://www.nature.com/articles/s41598-019-40133-4/email/correspondent/c1

    Don't feel unlucky that tics did not getaway. Looks like they don't getaway very quickly, it always takes sometime. 

     

     

     

     

  14. 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 what I learnt so far after reading more then 1000 pages , closely following all research and observing all the cases nearby. (I will include a link to a very recent research that will also shed some light) 

    1. TS is not much different then having only motor tics (I am not the only one thinking this way) . Some tics that are categorized as vocal tics are not true vocal tics. 

    2. Tics are very common, some go unnoticed and some reduce to unrecognizable level quickly and got forgotten 

    3. It's very likely that there is no such thing as transient tics. Almost all tics stay for longer then a year. This one year mark put on the diagnosis criteria is arbitrary and is based on scientific evidence. (see the paper below) 

    4. On significant amount of the cases , tics will get a lot better in 12 months of onset. However presence of anxiety disorder correlates with worse outcome on tics severity decreasing. 

    5. Tics usually don't come alone and come with OCD/ADHD/Anxiety disorder. After reading several research reports, I think not having a comorbid issue is suggests the best outcome. Having Anxiety Disorder has the most negative impact on tic severity. So if your child also exhibits these comorbid issue , you need to focus on them too. 

    6. Multiple tics are very very common, it's quite normal that number of tics to increase and some of the tics be replaced with others. 

    To sum up, this is most probably going to be a journey. Your first focus should be reducing anxiety over the child as much as possible and watching for symptoms of stress. Keep a diary. It's very probable that tic severity will be down very significantly in 12 months. We had the exact same issues (I think I've seen and still seeing , almost every tic in the book  and had sometimes 5-6 different tics at the same period) and after 18 months, severity is very significantly lower (still waxing and waning) and I hope it will keep on getting better (though some people comment puberty can make things bit worse for a few years..) 

    Some people are able to determine links between tic severity and some external factors like allergy or certain types of food intolerance, environmental factors etc... I did my best and I could not be able to positively relate the severity of tics to anything other then anxiety and sleep. So I am focused on better sleep and keeping anxiety and stress to bare minimum. My child has allergic rhinitis (confirmed by a specialist) but I could not able to link tic severity to allergy severity positively, but I took all the precautions to decrease allergens around (remove carpets, hepa filters every where , anti-allergic stuff etc..) 

    Please read the latest research on the topic , do not bothered much with words like TS. Unfortunately, despite the high frequency of tics in population this is still uncharted territory. 

    https://www.nature.com/articles/s41598-019-40133-4/email/correspondent/c1

     

    BTW : I am trying to reach out to EMTICS research reports with no success at the moment. If anyone knows a link I'd appreciate. That is the only large enough study that can shed light to some of the outstanding questions. (though I got some doubts) 

     

    best regards

    Mertol 

  15. 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. 

  16. 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 noises with her tongue inside her mount (like 'chack chack') but I know I used to make it too and have seen other kids doing the same a lot. Not %100 sure if tic or not. 

    Since the very first day, her tics had been morphing in to newer once pretty quickly and I think we've gone through most of the possible tics. 

    I think spending time with her and helping her build her confidence helped the situation. 

    Now, school will be starting and I know it will stress her. Her resistance to stress got a lot better but I know some of her tics can come back. Worse of all I may need to travel more this year... 

    I wish the very best for all the worried parents in the forum. 

  17. 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. 

     

  18. 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 carefully adjusted everything accordingly. 

    Still her tics are extremely elastic. Dominant tics which looks like they are here to stay goes away within 4-6 weeks and gets replaced with something else. 

    Vocal tics are almost gone at the moment. Maybe just a little bit of breath tic before sleeping. I think those are more related to her abdominal tic being milder now. 

    Almost all tics are rarer and intensity is quite low, with bouts being reduced to 1-2 instances daily. 

    We will be going for a 30 day vacation at the home country hope that this won't elevate... 

  19. 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 significantly more complex treatment is needed. However most of the time PANDAS cases worsen quickly and tics will not be the most important problem. (I know there are some tic only pandas cases, but they are very rare) 

    2- Focus on being normal and not worrying him more. He would sense stalking, believe me. My 4 year old senses easily. If you feel that he is worried just tell him that it's quite normal and they will probably go away soon. 

    3- Given the age and described severity decrease, there is very good chance that they will go away soon. 

    4- A cleaner diet doesn't harm. It also gives you something to focus on. 

    5- I and probably my 4 year old also has allergy to dust. I take necessary precautions (atleas tsome of'em) , 

    - mite barrier at pillows 

    - dehumidifier with heap filter

    - air purifier with heap filter 

    Those seem to help me and her a  lot. Not sure relation to tics as there is no way to do an A/B test but since I've taken those cautions tics severity has gone down a lot. Not %100 sure they are related. 

    best regards

    Mertol 

  20. 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 house only. 

    We got an appointment for the allergy doctor (8th of July)  

    In the mean time tics are rotating pretty fast. Now we got a facial (grimacing around jaw) which is pretty infrequent. There was an other tics, moving her jaw in an awkward way but that only lasted 2 days and couple of instances. Not sure if this will be around or will go away like the other one. Rotating speed is a lot higher then what I read. Some say, it's sign that these are transient while some also say that this is pretty common with TS. 

    We got no signs of anxiety, ADHD and OCD. I think that it's pretty uncommon to develop ADHD after this stage but OCD is something to look for. So far she is one of the most pragmatic kid I've seen at the very opposite end of OCD spectrum.  

  21. 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. 

  22. An update. I was kind of wrong that her tics are not correlated with allergy/illness as on the 3rd day, tic frequency, intensity and number of different tics rose sharply. 

    She was having repeated sneezes, scratching around nose and eye, running nose, which are the exact symptoms I have when my allergy elevates. (My wife still disagrees that we have positive evidence) 

    Anyway within 24 hours 

    - Started ABX (augmentin) 

    - Removed %90 of the rugs [we already had very minimal amount of rugs] 

    - Installed 2 dehumidifiers to keep humidity around %50 so dust mites die. [that's good but not enough]

    - Installed 3 high quality air purifiers with HEPA filters , each can cover 50m2

    [all second hand btw ]

    Frequency and intensity of tics went back to base line, though as I changed way too many variable I don't correlate this to anything we've done. 

    Things to do : 

    - Change mattress's and pillows to anti-allergy versions

    - Properly clean the AC system or get it cleaned by pro's. 

    Drop me a PM if you need more info on how to choose dehumidifier and air purifiers as there aretooc many science fiction out there. 

    best regards

     

  23. My daughter has this breath/humm (it's more like a short melodically himm, maybe repeated 2-3 times) too. I think that it's related to the abdominal tick. Her abdomen tick causes a short stroke of air flow and looks like my daughter is covering the airflow by making this noise. (educated guessing here) 

    %95 of the time this tic surfaces when she is passive/bored. 

    Cutting screen time costs a lot of free time, from me and the wife as we need to perform rather then TV :)

     

     

  24. Hi Edonr;

    So far she had developed several different tics, including a vocal one and a breathing tic (only visible just before going to sleep) 

    However some of the earlier tics are barely visible and very rare. It's more like we have subset of tics some of which are changing in short notice. 

    For the last 7-8 days frequency of tics went down considerably to a point I can see 1 tic per minute and almost no bouts and longer intervals where we don't see any. 

    Right now, her allergy level is up and she is also ill. I did not yet recognise a correlation of increased tic severity vs allergy or vs being ill. We went to paediatrician for the fever (not for tics) and he said it's probably viral and advised to wait as fever is not high and not continuous. However she has sore throughout (visible, not sever) and I can also recognise strep rush like pattern around her mount (in vey mild form, I was not in the doctor appointment but made my wife ask about and paediatrician said it's normal during fever.) Paediatrician also offered to take a look at Strep tigers as he was aware of pandas and claimed that he had diagnosed one lately (he also added that we had the strep tiger checked already couple  of weeks ago, so that's kind a redundant) My wife did not want the kid to go through giving blood. 

    It's almost impossible to understand if anything helps or it's just placebo. So far that's what we are doing 

    1: added magnesium supplement 

    2: trying to increase sleep time. I am positive that sleep duration/quality is important and correlates. 

    3:A lot less TV, less then 5-10 min average, usually zero. Converted tV time to physical activity and role playing 

    4:Almost no iPhone/ipad time (her tics really increase playing with those) 

    5:More time with her peers. (not very easy in the mid of summer in Dubai) 

    6:Less milk in the diet. almost no junk food. Just like others, it won't hurt anyway. 

    I hope that your son out grown all these and wish the best for you. 

     

    best regards

     

     

     

     

     

     

     

     

     

     

     

  25. Since my last post, she has gained two more tics. One is vocal and connected tightly to the abdominal tic, making a sound like mmh , ummh briefly. Usually occurs before sleep but sometimes I can hear it during normal times. Other one is, moving the jaw to back/side of mount. 

     

    PS: Looking backwards, more then a year ago I was able recognise her moving her jaw front (asked my wife, dentist, to check if there was something wrong with her jaw closure etc...) and her nose flaps flaring (pretty hard to notice as her nose is smallish) Still I can not confirm that these are %100 tics and were present a year ago. Back then, like everyone would in a year, had a few infections. 

    Our first doctor has tested Anti-Streptolysin Abs(Turb) [which I think is same as ASOT , right?] and a throat swap and did not find anything. 

    We have not seen other symptoms of PANDAS/PANS like OCD, AD etc.. while we have some small issues like : 

    - She likes to stand late and does not want to go sleep and may sometimes wake up mid-night. 

    - She has urinated in sleep , 2 times last 30 days (at those episodes she had trunk a lot of water before going to sleep) 

    - Her tics get 5-8X more intense/frequent if she is exited (we went to a Floating Ship Hotel) 

    I am super worried as she has developed  vocal tic and she is adding a new tic every 3/4 days. 

    My question is should ask our doctor to go for more comphrensive tests for PANDAS based on the fact that tics are growing very fast? 

     

     

     

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