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  4. Hey! Nice to meet someone else who does this in 2020! 'Cause most of these posts are from a long time ago. So I'm very happy to see your comment. :) So uh, I posted on this thread already. It's the one right above yours. That was back in March. Since then I've started therapy, but my therapist thinks it's a cool talent.... I agree, but it's also very annoying sometimes, like you said. Like when I'm trying to read, fall asleep, listen to someone talk, pay attention in class, etc. It makes me feel like my head is very busy and noisy, and like I'm spending extra energy on the counting so it's exhausting sometimes too. By the way, I change words around as well. I add/remove letters to get the length I want. Another thing I do is that I'll take a sentence, and try to shorten it to 10 words exactly. Either that, or I try to make it as short as possible without losing its original meaning. I also count pen strokes, like the letter f has 2, the letter o has one, etc. Yet another thing I do is looking for visual/aesthetic patterns in words, using the shapes of the letters. Often I'll change the shape of letters to fit a pattern I want. Examples: "sAndwich", "Carpool", "bookMark" I dunno if that makes sense.... I probably explained it more in-depth in my original post. But yeah. Umm, again, it's cool to hear from you and I hope you're doing well
  5. I’m so happy to have found this forum! I’m only 13, but it really encourages me to see that there are people who do very similar things to me. Like many people on the forum, I can instinctively count the number of letters in a word or in a sentence. (Although I don’t count spaces or punctuation, I do usually count apostrophes?) Particularly for shorter words or phrases, I can do this practically without thinking. I have been doing this since as long as I can remember, but I never thought it was something unique to me. I only realised that it was quite rare when I was doing crosswords with my sister a couple of years ago and she was shocked at how quickly I could tell her the lengths of words. Whilst I know other people who can kind of do the same thing, such as my dad and one of my friends, they can’t do it anywhere near as fast as I can. I knew that there must be other people who could do it like me, but I’ve never met anyone who can so it’s great to hear about other people with the same skill! Everyone who finds out about it thinks it’s really cool, and it’s great for entertainment, but it can often get frustrating when I’m trying to read or when someone is talking to me, and I can’t help but do it. My method for working it out is a bit confusing. I sort the letters into number bonds to 10. For example, if the sentence was ‘The cat sat on the mat’. For ‘the cat sat’, I can tell straight away that it has nine letters. Then, with the word ‘on’, I take the O, add that on to the nine letters, put that ten aside, and carry over the letter N and keep going. I can do this in less than two seconds. It’s complicated, but I’d be really interested to know if anyone does a similar thing. My spelling has always been very good, as has my grammar, and English is one of my favourite subjects. I’m also generally considered quite smart? I don’t know if that has anything to do with it... Something that really irritates me when I’m counting letters in sentences, particularly when reading, is when a sentence doesn’t have an even number of letters, or particularly if it isn’t a round number (like 10, 20, 30 etc.) A lot of the time, I change around words or add extra characters (even though this sometimes doesn’t make the sentence grammatically correct) just so that it ends in an even number or in a round number. Another counting habit that I have is the number of stairs in a staircase. I always need to start with my right foot and finish with my right foot as well (therefore an even number of steps.) If the staircase doesn’t have an even number of steps and I have to finish with my left foot, I always change them around so that I finish with my right. At my primary school, I memorised the number of steps in every single staircase so that I would know where I would need to change foot. This is nowhere near as serious as the compulsions and obsessions of many other people on this forum, but I just thought I’d share it because it’s great to be able to talk about it to people who do similar things and who can actually understand :)
  6. Hello Kate424 I just wanted to welcome you to the forum, and hope you may get some replies soon from anyone in your area who may have recommendations
  7. Quan_daniel I know this is an old post, but wondering how your child is doing now?
  8. Hi there, I'm new to this... My son has chronic tics of multiple types that have been going on for over a year now. We've spoken to his pediatrician who doesn't have much to say on the topic except to think of referring him to a neurologist or psychiatrist. If possible I'd prefer a different track first, and see if we can find a doctor to guide us who is more aligned with the therapies in the Natural Treatments for Tics and Tourettes book... I've read the pinned post about finding doctors and tried to find a doctor nearby, but not finding exactly what I'm looking for. I'm a newcomer so I'll say I don't know exactly what I'm looking for ;) so that may be part of the problem! But still, I'd love any personal advice and recommendations from those in my area. I'm in northern Baltimore County, MD. Does anyone have experience with any doctors in the Central Maryland/DC/Delaware/Southern PA region? We're willing to travel a bit. Many thanks in advance for any thoughts!
  9. Hi! Thank you for your responses! We will continue with clean living and go from there. We did got back to our Chiropractor to have him take another look and to price an allergy test. He did not want to do the allergy test just yet, because he feels we need to give the inflammation time to go down before we test. We had him look at her tonsils to see if he could see any throat related issues. He said something interesting, he said her uvula (the thing that hangs down in the back of your throat) goes towards one side. He said he commonly sees this in patients with some sort of neurological issue. Have you ever heard this? He also mentioned it is somehow connected with Vagus Nerve in some way. I did not pick up on all that he was saying exactly. He did mention I could try doing things to stimulate her right side (massage, one side jumping jacks, etc) to help so that her brain didn't feel it needed to do something extra to stimulate itself. I may be misunderstanding everything he said because as I type it, it sounds a bit odd??!! Either way, we are going to keep trying what we are doing and go back in two weeks for a follow up and maybe an allergy test. Thanks for everything!
  10. Hi SharingSheryl--I loved that: I am totally freaked out by it and my husband is totally not! Hah. That's not unusual, though sometimes the roles are reversed. It must have been a serious bout if you took her to the ER. I sympathize with all the family stress over work and am glad it sounds like you were able to stabilize things. Meanwhile, so many parents are frustrated with the reliance on screens these days. Great that you have reduced computer and phone time. Please let us know if you have seen any change with the allergy-free diet you started a few days ago. When you say you relaxed the diet this last year, was that specifically for gluten -- or for gluten and other foods and maybe additives that you had been avoiding? We have definitely heard from people who had a child with tics that included breathing issues, and the ones who contacted us were able to resolve the issue. There's not a single approach that worked for everyone. But you seem to already have some food-related clues from when she was an infant--and your daughter says she does not have trouble actually breathing. You've been to the ER and had her checked out, and the chiropractor suggested a gluten reaction. Unless things worsen, it seems it would make sense to focus on foods (keep a log and you probably know that something like gluten can take time to clear the system). Can you go back to what you were doing a year ago? Also reduce the allergic load in the home. Has anything changed in the home environment in the last year? And please make sure that you do not have scented products in the house, from cleansers to deodorizers and personal products. Go natural. Does she have exposure to pesticides or chlorine in swimming pools these days? To answer your question, all doctors can be expensive if you don't have good insurance, and that includes environmental physicians. Why not do what you can on your own as soon as possible, and watch to see if there is improvement. Then take the next step if needed. We will look forward to hearing back. Good luck with your efforts!
  11. Hi and welcome to the forums. I am hoping others who know more related to Celiac issues will be along soon. I do know we have many posts related to screens and tics, albeit not specifically breathing tics. As I need to head out to work, I will check back later and try to give some links to other relevant discussions and articles that you may find helpful
  12. HI There, I am struggling to determine what exactly is happening with my 6 year old daughter. 6 months ago we began allowing her to watch netflix show in our cell phones with headphones and I noticed she would regularly stop and bend her head up towards the ceiling. It seems like she was stretching her neck so I figured it was related to the headphones and funny angle. Then 2 months ago all broke loose at home when our family business was put through the ringer. Her father and I completely checked out while we worked around the clock and she began spending all day on the computer keeping herself busy while we tried not to loose our company. It was highly stressful for all. During this time she developed a breathing thing, where she would breathe out forcefully. It has grown over time into this full blown breathing habit/issue? It happens all day, most every day. She forcefully pushes breath out 1-6 times in a row at approximately every 10 seconds-10 minutes depending on the moment. She also stretches her hand and foot out over and over until they hurt. Work had settled down and we have gone back to being very involved and the computer is down to one day a week. We pulled phone time in case it is photo sensitivity. We have started magnesium/vitamin b/fish oil/ allergen free diet over the last couple of days. Initially, we took her to the emergency room thinking she was haing breathing troubles. They did an xray and exam and found nothing wrong. She wasn't doing it as frequently as she is now at the time and she acts totally fine in between bouts. She says she breathes just fine and just feels the urge to do it. We took her to another doctor and they tested her pee for an infection and id another exam. Again she wasn't doing it as bad then. We also took her to our chiropractor who said it is likely an allergic reaction to gluten, etc. Our concern is how do you know if it really is a breathing tic or a sign of something else? it is very hard to find a video example of this kind of tics in order to confirm in some way. We do not have insurance and do not believe in prescriptions for long term use so it is hard to know how to diagnose. Background: As an infant she complained of stomachaches continually and then her teeth began to break off easily and she broke out in an all body rash for a couple of days. This is when we were alerted is was likely food allergies, specifically Celiac Disease (the teeth are either genetic or a result known as celiac's teeth). We cleaned her entire diet up and she stopped complaining about her stomach and she did not have a rash again. Over the last year we have been relaxed with her diet because of extenuating life circumstances and we weren't sure if she actually was allergic because we never had an official test done. She didn't complain and nothing happened immediately as a result so... then this. Has anyone else seen this kind of breathing tic? How do you know if it is a tic versus a throat problem? Should we start with an Environmental Doctor or go to a pediatrician and then neurologist to confirm? How costly is an Environmental Dr? Can an Environmental Dr diagnose tics versus other ailments? I really appreciate any help any one is able to offer! I am totally freaked out by it and my husband is totally not!
  13. Thank you so much Sheila! Your words are very comforting. I have asked her pediatrician for bloodwork to test for common food and environmental allergens. My question though is if it is indeed an environmental allergen and we cannot avoid it, what should we do? Will her immune system eventually grow out of that allergen and hence the tics will be gone? I've read through the forums and we are trying epsom salt baths every other day, adding an extra probiotic to her milk, limiting her sugar + processed food intake, and adding some magnesium supplements. We try to limit screen time but it is hard to do that with school being virtual I'm also taking her to see a pediatric chiropractor today as well. Thanks again.
  14. Hi usernamecat, welcome to the forums. I read your account and really sympathize with what you are going through. Many of us on this site also had the tears and emotional response you are having. The good news is that many of us also found answers. I can't make any promises but the fact that you have allergies in your family is actually encouraging. Both physicians and patients/families have reported that tics can often be more like an allergy of the nervous system than what we would think of as a neurological "disorder." We have an article that will give you an overview of the new thinking for tic conditions (not necessarily shared by mainstream medicine- -- though it is good you are seeing a neurologist ) https://latitudes.org/conditions/what-is-tourette-syndrome/ Don't be concerned that the title is Tourette syndrome, you have said your daughter may have a different diagnosis. The article addresses tic disorders in general. Please read it through and see if any of it "clicks"" for you, OK? Also, at the bottom of the article there are several links to reader-friendly articles that you might like. I thnk they would be helpful. Try not to despair, there is often help for these cases. The goal is to discover any underlying the imbalances, and to learn what may be triggering the symptoms that your young daughter is experiencing. Hang in there--all the best, Sheila
  15. Hi there, I'm new here. My daughter is 7 (almost 8) she started developing some weird arm flapping movements along with jumps, this is happening all day and it worries me so much. I realized it could be a tic since the year previous when she was 6, she had an eye blinking tic. Her pediatrician is referring us to a neurologist who stated she may have complex motor tics during their consult. We are currently waiting for the neuro to schedule an appointment. It is so worrisome, I've had constant bouts of crying everyday. I am hoping that she will just grow out of of it or it decreases to only a few a day but will not affect her if she is at school. Currently she is doing virtual school from home due to covid (we are in California) but if these tics remain .... I'm afraid of her emotional and social development if kids tease her. During her zoom meetings she says she suppresses them but after the meetings are done she does a bunch. I tell her that it's ok if she needs to release them during her meeting or anytime she feels the need to and does not have to hold them in. Diet wise we have always been gluten free (her younger sister is allergic to wheat, egg, and cashew) and she's always had probiotics in addition to her multi-vitamins. I am going to add magnesium supplements for her. If anyone has experience please share! Does complex motor tics usually go away? Currently she does her arm flap and jump with the occasional eye blinking/roll tic. Is this a sign that she has TS? Its all so overwhelming. :( Thanks for reading, any advice, feedback, or stories would be really appreciated.
  16. Thank you both! I know our insurance will pay for only a few therapy sessions and nothing prolonged, but maybe that is better than nothing. I'll look into it. She has not had any vaccinations since her kinder year. We did delay her vaccinations because when she was a baby she had two small seizures in the week following her first vaccination. The neurologist and her pedi recommended we delay vaccinations. I started catching her up at 4 and a half years old in preparation for school... Ironically she was not sick a day in her life until the week after her second vaxx when she got the flu for the first time ever... She's had too many illnesses to count since then (strep, mycoplasma, flu, ear infections, fevers with out any other symptoms). I don't feel like it's a coincidence she never had so much as a cold before I started catching up on her vaxxes.
  17. Hi MLee It takes a very long time to load but it still loads up for me? It's an archived page. I just copied it so will paste it here for future reference too Again the link to the archived page is https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
  18. Hi Chemar, Thanks for this! When you click on the link it says not found. Can you copy/paste it?
  19. I would not discount therapy; you can get some on your insurance. Probably not the best, but something. For years I have been seeking for a cure-all solution for DD, and therefore did not give her the right therapy or psychotics, I regret that very much now, because we have a compliance issue. Children who are so highly anxious, cannot develop or grow properly. I would deal with this from both angles at once. This definitely cannot hurt. I was just wondering- was there a vaccine involved here?
  20. I've heard of getting people to draw clocks among other things, I was wondering if anyone has gotten their child to do similar 'tests' when in a suspected flare? I know my daughter writes and draws reverse and right to left with inflammation.
  21. I'm not sure--hopefully someone more experienced than I am can answer the question about a culture without a rash. I just can't believe it's 2020 and we're still having to fight doctors about taking the possibility of PANS/PANDAS seriously. I will ask a friend who is way more experienced in this about the various tests you can check/ask for --when you find a pediatrician or doctor who will agree to run them. Also, lots of good threads here on this board about which tests to ask for. In the meantime, hang in there! You'll get your daughter the help she needs.
  22. Thank you! I appreciate your response. I'm just having a lot of trouble finding a pedi who's on board with doing more testing for PANDAS... they all seem to want to hand us off to therapists for treatment. I mentioned Lyme but they don't want to test because she's never had a bullseye rash. And all the the pedis who are known to treat for PANDAS in our area are not taking new patients. Also, yes they have been sending the rapid strep tests on for further culturing, but they've been negative. Her last positive test was in November last year. She has been complaining about pain in her perianal area off and on this month, but there's no rash ir redness that I can see right now. Can they culture without an active rash?
  23. Wow! I’m really sorry you and your family are dealing with this. It definitely sounds like PANS to me. Have you tested her for anything else besides strep? Myco p? Lyme? My 7 year old had both Myco P and strep in August 2018 as his triggers. We cycled through several different antibiotics (starting with amoxicillin which just barely helped) before finding the right combo for him. It took months for him to get back to baseline and he does have flares from time to time. And yes—teeth can be a big trigger for some kids—it is for mine. I’d definitely look for other triggers besides strep. Also silly question but your drs are doing a strep throat culture in addition to the rapid when they test for strep, right? Once my son’s rapid came back negative, but culture was positive three days later. Also isn’t an anal rash a sign of strep, too? Good luck and keep digging for answers!
  24. Hi all. I highly suspect that my 9 year daughter is suffering from PANDAS/PANS. A brief history - my daughter has had chronic strep infection every winter/spring since 1st grade. February 2019 she got a strep infection, was treated with antibiotics, but had a lingering cough for months after that, enough for me to have her allergy tested in July thinking she has seasonal or environmetal allergies (test said she has nothing of note). In July things went downhill overnight...her symptoms were sudden separation anxiety, health anxiety (fear of dehydration, cancer, heart attack), fear of elderly people, constant feeling of lump in her throat, intrusive thoughts, urinary symptoms (frequency and pain), pain in her arms, head, and legs, heat intolerance, hyperactivity, and trouble sleeping. When she was excited or upset she also began snapping with both her hands repetitively. Her doctor said she likely had anxiety and that her pain was simple growing pains. Symptoms increased through August and October...she was checked for UTI, her thyroid was checked, both were ok. She developed a painful, bright red anal rash in September which her pedi brushed off as yeast...I didn't think it looked like that, I thought she may be reacting to a food since she has some food sensitivities (gluten and tomatos). By October she was hyperventilating when getting dropped off at school, was having to reassure herself every morning. She developed constipation (never a problem for her before) and thus a fear of bowel movements. She could not talk about any of her symptoms or intrusive thoughts without severe panic/hyperventilation. I started her on an L-Theanine supplement which seemed to help her somewhat. It was at this time I ran across PANDAS in my research and I felt she fit the profile...I asked her pedi about it but she brushed it off as too controversial. In late October she woke with severe pain when urinating so I took her to urgent care and had her tested again...there was no infection but a tiny bit of blood in her urine so the doc prescribed her keflex. Within a day we saw improvement in every single one of my daughter's symptoms. Within several weeks she was pretty much back to normal, so I was convinced it was PANDAS. Fast forward to now...in late June she started complaining of a sore throat...strep test was negative. Her symptoms have all started to come back since then, including some new ones - fear of choking/restrictive eating, fear of me dying, and she suddenly began struggling with her piano lessons. She complains intermittently about her throat being sore with some ear pain and pain/discomfort when urinating. Her new pedi which is much more open to the idea of PANDAS did some bloodwork for strep titers but those were normal, so she feels this isn't PANDAS. L-Theanine isn't helping her this time so I began giving my daughter ibuprofen, which at first seemed like a miracle. After about a week it stopped working too. Her pedi won't prescribe antibiotics without a positive test, so in desperation I did a telemedicine visit with an online doctor about her sore throat and ear pain and she was prescribed amoxicillin last week. There was initial improvement in her symptoms (especially the eating issues) and an immediate, profound improvement on the piano, but after 3 days on the antibiotic, her anxiety is worse again and she's snapping much more now. She's doing online DL for her school and I can hear her snapping away in the loft when she's excited about something. She's back to being scared of being dehydrated too Does this sound like PANDAS to you all? I was so sure the antibiotic would help completely, but it seems to be helping with only some things this time. Also, she got upper braces in March 2019, and had her lower braces put on this June 2020. I hear that dental work can sometimes cause a flare...could that have been a trigger for her this time and it that perhaps the reason that the antibiotic is not working as well? I'm at a loss. We can't afford the cost of an alternative doctor right now, nor therapy for her...though we can probably swing it in a few months after I start working again.
  25. Hi 🙂 I get PMs from so many members who are desperately looking for guidance on this challenging journey to help their children. Apart from being able to share some of my personal experience, and to suggest searching the many helpful threads members have posted here over the years..... I cannot think of a better #1 resource than everything that is on the ACN/Latitudes homepage at https://latitudes.org/ I found the original Latitudes magazine many years ago as a desperate mom seeking answers to help my then 10 yo son, who was diagnosed with genetic Tourette Syndrome with very severe tics & OCD, and was negatively reactive to medications. It was a turning point in our lives, and I will forever be so thankful to Sheila Rogers De Mare for providing a portal to research alternative ways of treating tics & TS, and learning about the many factors involved in why children may tic, that go beyond just "genetic" TS. Fast forward all these years and my 30yo son is doing so well, with a full life and good job, while also using his artistic talents as a singer/songwriter, and enjoying a thriving social circle (outside of the current Covid restrictions). These are things that I confess I despaired he may never achieve during those early years on the TS journey, and I honestly attribute so much of this to the insights and resources I discovered here at Latitudes. He is testimony to the fact that there is healing hope for even very severe TS & tics beyond pharmaceuticals! These days there is so very much more available at ACN/Latitudes to help parents looking for solid foundations to base their quest to help their child(ren) heal naturally. Sheila's carefully researched books on are an invaluable resource https://latitudes.org/store/ while the comprehensive menu of conditions, and therapies,as well as articles by many acknowledged experts in this field, contain a wealth of information. I am writing this post as a testimonial, as I hope that the many visitors seeking guidance on these forums will also explore the main website, and discover answers to help their children heal more naturally. I am still here after all these years to "pay it forward" for the invaluable help I found at ACN/Latitudes. My prayer is always that others will find that same hope and encouragement here.
  26. Updating here that I found an old archive of Bonnie Grimaldi's original treatment protocol for anyone interested: https://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
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