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  2. I was wondering if there's a link between misophonia, arithmomania and epilepsy (I have all 3 of these). If anyone doesn't know, misophonia is where you consistently have a really strong emotional reaction to very specific sounds, which can cause you to change your behavior (like avoiding people or covering your ears). Some of the worst things for me are: this one girl at school who would eat snacks and pop gum ALL class long, every single day. The chewing and snapping gum became unbearable to the point where I was plugging my ears with my fingers for the entire class, or listening to extremely loud white noise via earbuds. Then there's my dad, who makes this clicking sound with his mouth that makes me want to cry 'cause it bothers me so much. Also, my parents eat pork rinds a lot, and I just can't be in the room with them at all. That's just the tip of the iceberg. As for arithmomania, that's like, umm, an obsession with counting I guess. There's already another forum post on here for it I believe. I've read that it might be OCD but I'm not sure. So, I count the number of letters in words, the number of pen strokes in the letters of words, the number of words in a sentence, etc. I change the spelling and height of letters in words (i.e. capital to lowercase) to make a visually appealing pattern (i.e. "Nintendo"). I prefer certain numbers, like 10 and 4, for these things and other little word/letter things I do. Hopefully you get the gist. These word counting games are quietly going on in my head almost all the time, like background noise, even at this very moment. And finally, as for epilepsy, I have juvenile myoclonic epilepsy. I've had it for at least 4 years, but only 2 seizures overall. The arithmomania has been in the last 2 or 3 years I think, and the misophonia showed up less than a year ago. Oh, and I'm 18 years old, if that matters at all. So...is there any connection between any of those 3 things? What's up with my brain?? And do I have OCD? I haven't been diagnosed with OCD, although besides the counting, apparently I do have other potential OCD symptoms like repetitive violent thoughts that really scare me.... I'm not depressed or anything though. Life is good, but terrible thoughts of hurting myself and other people and animals keep popping into my head, and that makes me feel guilty and scared of myself, because I don't actually want to hurt anyone. These thoughts have been going on for over a year now, and it's always been the same ones. Like...stabbing myself in the eye, or stabbing one of my family members.... I can use knives but they make me nervous. I just want it to stop.... What should I do??
  3. Hi guys! So I was diagnosed at 7, and I’m 25 now. Side note if anyone has any questions or needs support or advice I’m always here to lend a perspective about what your kiddos might be going through. I remember it all very vividly. I was wondering if I could get some recommendations for supplements/treatments. I recently started having a bad flare up of OCD symptoms, hasn’t happened in a very long time. My previous DBT training and therapist are a huge help- I can manage it. But I’d like to reduce the symptoms as much as possible. I work in an OR and it’s difficult to manage intrusive OCD thoughts when you’re trying to help with surgeries haha. Also, love to all of you. It’s been really nice reading this forum and seeing how much you all care about your children. You’re rockstars never forget it ❤️
  4. Oh wow, life suddenly makes much more sense me. I’m 25 now- diagnosed with PANDAS at 7 (was part of one the first studies in Boston) but I always used to have issues in the summer. I LOVED swimming but was always confused by my own behavior. I’d be a fairly social kid most of the time but was struck harder with my OCD, antisocial, severe anxiety symptoms (not all of them but I wonder if chlorine was a trigger for these more than others) during the summers. If it’s any consolation, now I swim at the Y (heavily chlorinated haha) and often feel extremely calm after (I think just the mindfulness for swimming) so I think maybe chlorine makes it worse when the immune system is already freaking out or less developed (childhood, antibiotics). I still get PANDAS symptoms and am trying to work on finding triggers but chlorine isn’t one anymore. But thank you for helping me connect some more of the dots!
  5. Earlier
  6. Yes, they fit all regular light & lamp fittings. Only difference is the light spectrum they emit.
  7. Thank you! I haven’t heard of these. So you put them in lamps and lights in your home? Especially in lights in areas where computers are used?
  8. Daylight bulbs emit the light spectrum that being outside in daylight would :) Using them when on screens helped my son. It was physician recommended. We used them during the day and extra at night when he was on any kind of screen, including TV. You can get them at Home Depot
  9. Thank you Chemar for your response! What are daylight lightbulbs?
  10. Sorry to hear of the flare up. It is possible that increased screens could be contributing and yes, I know in my area the pollen is very high due to no rain in a long time. If he is stressed due to hearing about the pandemic, plus the change of routine being homeschooled, that could be a trigger too. The good thing is that he is home so not having to be extra stressed in social environments. I would just keep doing the things you know are helpful and try to remove as many triggers as possible, with understanding that screens may be hard to limit due to online school? We did find that using daylight lightbulbs were good as the screens in darkened rooms always seemed to trigger my son more Hope things stabilize for him soon. Be safe.
  11. Hello, We have been able to manage my son’s minor tics mostly thru diet (GF+DF), some exercises, Epsom salt baths and magnesium. It keeps the tics very subtle Just this week though he is getting worse/having a flare. We are at home for school become of the virus, so maybe it is the increased screen time. Then I think maybe it’s something in our house. Or it could be seasonal allergies. It is so upsetting. I don’t know what to do. 😢 any advise?
  12. 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
  13. Thank you all for these Insightful perspectives. I do so appreciate it.
  14. @BeeRae22 What treatments are you currently using? I may be able to offer some suggestions.
  15. I am very sorry. PANS is hard enough without the coronavirus problem on top of it. I am thinking of you. Have you reached out to a specialist?
  16. I’m so sorry This disease really is so frustrating, because when things are going well, we’re constantly watching and waiting for the shoe to drop...and when things are not going well....life is just terrible We are pretty new to PANDAS so I’m not the best person to give advice for what you should do, but I’m sending you love and support and I hope your child gets over this episode quickly.
  17. 2+ years at baseline. Symptom free. Then bronchitis. Now... full blown Pans symptoms. Again. I don’t know that I can do this. Again. someone please help.
  18. Hello, My child has been on two antibiotics for about 4 months and was gradually improving. Suddenly, (after taking Flonase for 4 days; not sure if it's related - nasal congestion at night due to possible allergies as per ENT) she seems to be exhibiting PANS behaviors that I hadn't seen since the beginning, and simply not doing as well. Just wondering if this has happened to anyone else? Did any of your children do well, then regress? Did they get back to improving again? After how many months was your child very close to their old selves? Thank you!!
  19. Hi My son has TS and chlorine was a very major tic trigger for him. It's a relief your child didn't seem to have a reaction to this recent swim. Asking the camp to allow to shower at least directly after a swim in chlorinated water sounds like a very good idea!
  20. Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools. Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect. With camp around the corner, I do worry about him swimming every day, though. I asked the camp to have him shower both before and after he swims, just in case. So I’m curious how many of us have PANDAS kids affected by chlorine. Please also include information about where your child is in their recovery. Thank you!
  21. Bumping this old thread of mine up due to PM requests. Just updating too that my son is now in his early 30s and doing very well. He still maintains healthy diet and environmental habits, and takes only a few specific nutritional supplements that keep both the TS tic & Crohn's under control. He also avoids the things that he knows can trigger tics, and has found that as he maintains an anti-inflammatory diet for the Crohn's Disease, so that also proves very helpful for tics. He still knows without a shadow of doubt that a healthy immune system and avoidance of tic triggers as much as possible is key. His worst tics really were in his preteen to teen years and once he entered his 20s, although the TS remained, yet the tics were minor and much easier to keep subdued. Most of the people he encounters either at work or socially have no idea he has TS, unless he chooses to tell them.
  22. We are seeing a doctor here (in Canada) who is familiar with and treats PANDAS but I don’t know how well-versed he is with all the treatment options. I think he over-diagnoses PANDAS which takes away some of his credibility too. It’s really hard to find a good doctor here who knows exactly what to do. Even getting the first round of amoxicillin for 10 days took months of begging numerous doctors until one finally agreed to try it. He’s doing well overall right now but I have no idea what the future holds.
  23. So we didn’t see any real improvement on amoxicillin—he was on that for 14 days. Then we saw an infectious disease specialist who tried Azithromycin for 5 days, then Doxy for a week and Keflex for a week. No real improvement—maybe moments here or there but things also seemed to get worse. Then we saw a PANDAS specialist—Dr T—and tried Biaxcin for a month. Some improvement, but then he added in Augmentin which again helped. Then switched to Clindamycin and Rifampicin which again helped (each switch prompted some setbacks). That last combo seemed too harsh for his stomach and we switched back to Azithromycin. We also went gluten and dairy free for 6 months or so in the hopes that it would help get down the inflammation. Honestly, I think it was a combo of longer term antibiotics plus gf and df plus time that did the trick. I know the stress and heartbreak you’re feeling about your baby. You will get him back fully. That was one of the things Dr T said to me and though I doubted it at the time and then during the process it did indeed happen. And when I get an attack of the “what if’s” I try to remind myself that if he does fall off the cliff again we can get him back again. Are you seeing a PANS/PANDAS specialist?
  24. Thank you for your reply! He’s had a good few days, but I guess my problem is that I’m having a hard time accepting anything less than 100% recovery. Constantly worrying about the “what if’s” are ruining my life. So do you think he needs a longer course of antibiotics? How do I know what to do from here?
  25. Hi, My son was on antibiotics for 6 or 7 months and it wasn’t till his strep and myco p titers fell that we saw great improvement. I think even though the strep was gone the antibodies stay elevated for months afterward. Certain symptoms of his went away during that period—only to be replaced by other symptoms/rituals, etc. Finally, after months. I could get him to see that some of the remaining things were just “bad habits” like refusing to walk on our new rug and he slowly started to break those habits. Also teeth were a big trigger for him. Loose/losing teeth and having new teeth come in all played havoc with tics/ocd, etc. But take heart—he just lost three teeth this past winter and now all three are coming back in and there were no flares so it may not be that you‘re looking at 5 more years of teeth triggered flares. Hang in there—that pit in your stomach will eventually ease up,
  26. I’m so late! It’s 2020, lol! But I’m 18 and I have this letter/word counting thing too!! It’s SUCH A RELIEF to know that I’m not alone!! If any of y’all still check this thread, I’d love to hear from you.... I’m specifically wondering, is there any way to at least quiet these thoughts and habits? It’s been going on for like 3 or 4 years for me, and I haven’t been able to stop it. Or can it naturally go away over time? Here’s what it’s like for me. I don’t really do the alphabetizing thing or certain other stuff y’all described. One of my tics is something I didn’t see anybody else mention. I’m obsessed with the heights of lowercase letters. High, medium, and low. Example: h, a, y. So I love finding words that form patterns that I find visually appealing in this way, like “yelling”. See how the letters’ heights flow from left to right? I dunno, I just like that. And “Nintendo”. I like splitting words in two groups of 4 and making them kinda mirror each other visually (still with the letter heights). If there aren’t enough or are too many letters in the word, I’ll just add/take away some and change the spelling. I also change the heights of certain letters as needed to fit my desired patterns. I do all this in my head. And sometimes I subtly nod my head along to the pattern as well. Not a noticeable motion, just a very slight head movement that indicates the up-or-down direction my pattern of letters is going in.... I feel like I’m not making any sense, lol. Another weird thing I do that I think only one other person mentioned, is counting the “pen strokes” in the letters of a word and then adding them up. Example: “wow” is 9 pen strokes, or lines as I usually call them. Then I take the number of letters in the word (“wow” has 3) and add it to the number of pen strokes. 9 + 3 = 12, and I like that number. Usually I use all lowercase letters for this, but for pronouns I typically keep the first letter capitalized. Sometimes I capitalize all the letters and do the same routine to see how that changes things (because capital letters often have more pen strokes). Speaking of numbers I like, my favorites are usually 4 and 3 to divide with, and 10, 15, and 20 to add up to. It’s not just letters for me. I also count words in sentences. In things people say, in music lyrics, in tests at school, in text messages, etc. Even as I’m writing this, I’m counting my words. I crave a balanced amount of words, meaning I want to have a “good” number of words like 10 or 20. For example if somebody sends me a text that’s like 7 words long, that really freaks me out and I have to scroll up to find the last message so I can add 3 more words to the first snippet. The letter-counting habit isn’t as distracting as it used to be because I’ve gotten faster at it over time. But the word and sentence counting thing can be very distracting when I need to pay attention to something I’m reading or listening to.... Reorganizing sentences kinda makes it hard to keep track of them, y’know? At least for me. Anyway, those are just some of my main habits that I currently deal with. Here are some other things about me that might be related, I dunno? I have mild misophonia, which is where you’re bothered by very specific sounds (for me it’s chewing noises), but more so than a normal pet peeve, like, you can’t concentrate at all when you’re around the sound and it even makes you have more extreme reactions (sometimes it makes me wanna cry, shout, retaliate in anger, etc). I also have epilepsy. I’m also considered pretty smart. Between those three things and the counting thing, what the heck is going on with my brain?? Oh, and I also love English and grammar and am pretty skilled in it, so maybe that contributes to this letter counting thing? And I’m very socially awkward and I talk to myself a lot when I’m alone.... So yeah, I don’t know if any of that could be related somehow but I thought I’d share it just in case. Another counting habit that I have is where I’ll count my steps, but I have to step the same number of times with one foot as with the other. I also do this when I’m drumming a beat with my hands. I just told my mom about all this today. I’ve kept it to myself for all these years because I didn’t know how I could possibly explain it to anyone, and I thought I must be the only one.... I’m so glad I found this forum!! I really wanna meet someone who shares my habits!!
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